Thursday 10 May 2012
Endo The Line?...
I made it to my appointment with a new Endocrinologist at a different hospital. Different location, different faces, same old bullshit!
I'm feeling: sad, disappointed, frustrated, incredulous, angry, FUCKING PISSED OFF! Every cell in my body is telling me one thing whilst the health "professionals" are telling me something else.
Maybe I'm wrong and everything I've read and "learnt" is bollocks. Maybe I should just give up, go to that dark place. Maybe...
Maybe not! Do they not know that I am HypoMan?
I. AM. HYPOMAN!
And the fuckers have not got me beat... yet.
I need to retrace my steps to the very beginning and learn and learn and learn... knowledge... power... awareness... a great big "fuck you" to the health professionals who have let me down.
Let me recap for you what happened...
I was up at 5AM so that I would be "awake" enough to leave home at 7:30AM to make it for my 10AM appointment (the traffic to Cambridge during rush-hour can be a real bitch!). I arrived early as planned. I was pleased with myself that I had managed to get there what with the anxiety I felt and my history of panic attacks.
So far so good.
I knew that mentally I was far from my sparkling best but being a first appointment at a new place I thought I would see what they offered, go with the flow, roll with the punches...
First off a nurse performed the usual: height (6feet 2.5inches... where did the half inch go?), weight (127kgs or 280lbs... little by little), blood pressure (lying down and standing OK... can't remember the numbers).
Then the Endocrinologist asked for my medical history, greatest hits only, you know the drill. I thought: fair play, you are taking an interest. Next we went through all the results from the extensive blood work (7 vials) taken last week.
Liver and kidney function: OK. This is a positive as they have been cause for concern in the past.
Glucose (blood sugar): a little high. But I had not been told to fast before bloods so need to get test redone.
Ferretin and iron: OK. Did not get numbers/ranges etc. Need to get details from my GP.
Vitamin B12: OK.
Vitamin D3: a little high, 121 when above 125 is over-treated. Will reduce supplementation from 4,000IU to 3,000IU.
Right, thyroid numbers as at 1st May 2012 on 8ml/160mcg liquid suspension thyroxine (in brackets numbers as at 8th February 2012 on 162.5mcg synthetic levothyroxine):
TSH: 4.4 (0.44) range 0.35 - 5.5. A significant increase in TSH. Only explanation I can think of is the potency of the liquid medication as opposed to the synthetic stuff. Scientific I know. Now you can see how I dazzle any health professional put in front of me. Seriously, I've been feeling off the boil, maybe I need to tweak my medication up to 8.5ml, 170mcg equivalent, see how I go. Thinking.
FT3: 4.8 (5.2) range 3.5 - 6.5. Quite a drop. Needs further investigation.
FT4: 15.4 (17.4) range 10 - 19.8 (11.5 - 22.7). Do not understand if any significance here. Different ranges too, wtf!?
What's going on with my TSH? But get this: Endocrinologist not concerned as "in range" (that old chestnut!) despite previous Endocrinologist insisting a TSH of between 1 and 2 as being optimal. Is it any wonder? Who's on message? Consistency is all I ask.
Dream on.
This next bit is a real doozy... as my thyroid bloods are all within range there is categorically nothing wrong with my thyroid function. My symptoms appear to be due to depression, DEPRESSION! No, no, no, no, no, no, NO!!!!
It was at this point I knew I was fucked!
I picked myself up off the floor to request a trial of NDT all the while trying to block out the voice in my head laughing at me and my futile attempt to seek the wellness I deserve.
Needless to say: not alot happening on the NDT front... the same old excuses and lies. The 1,700 prescriptions of Armour Thyroid in 2010 (just checked: 2,600 in 2011 a more than 50% increase year on year!) must have been "private prescriptions"... so little respect for me, quite an impression I must have made, that lying to my face took less than 30 minutes!
For once I would like to hear: "oh, that is interesting. I was unaware of that but I will look into it, see what I can do and write to you when I have the information available. After all your health is our priority."
You can stop laughing now.
As something of a compromise the Endocrinologist agreed to discuss my case at the lunchtime team meeting to see if a trial of T3, to supplement my T4, can be agreed upon. A letter would be sent to my GP, who would then contact me, but who is not obliged to follow the recommendation of the Endocrinologist. I can't see it happening, can you? Especially if it is stated that my blood tests show that my thyroid function is normal.
So here I am. That age old battle between good and evil: the Endocrinologist believes it is all in my head: depression. Whereas every fibre of my being is telling me it is physiological.
I was so sad when driving home from the appointment that all I wanted to do was cry... but there are no tears left to fall...
For as long as we have hope we have a chance.
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I'm so sorry to hear the appointment wasn't too great mate. But remember...you are hypoman. You will kick ass.
ReplyDeleteI know what it's like to be told there's nothing wrong...it's not nice!! But the bit that pulls me through - there's always tomorrow. Tomorrow is always a new day. Bring on tomorrow, think positive, listen to your body & fight for what you believe. That way, no one will beat you.
Thats why I dont wanne see them anymore! On a tsh level of 0,0007 and a t4 level of 24 at the moment and haven't felt so good since I can remember! Increased Levo intake bij 50% during last 5 months! No more bloodworks apart for reverence for me! And no more Endo's! Had it with them!
ReplyDeleteAnd Nath!! Always tomorrow is my line!!
Hi Hypoman!
ReplyDeleteGet this Book it change my life...."Why do I still have thyroid symptoms?" (when my lab tests are normal)" by Datis Kharrazian, DHSc, DC, MS.
I went through this for almost 10 years, Endoc., Drs don't know shit...! You can e-mail me at Maydella@hotmail.com attention Tom.
Better Days trjarrell
Hello,
ReplyDeleteThank you for this blog and your sharing. I must say, quite selfishly, it makes me feel better because my Hashimoto is extremely simple. I live in Paris and French doctors are the same here : "you're having a depression" "you have to take into acount psychological factors... blabla bla". Still, with my textbook Hashimoto, my life is much easier than yours... Your acount of your "hyper" years is frightening !
I'm a bit surprised by your latest results. All the people I know (including Endocrinologist) say that a lower range TSH is best (around 1, up to 2 when over 50). Your levels are extremely high ! When mine are up to 2.5, i sleep like a winter bear and I can't concentrate.
It seems I don't have any troubles with my T4 > T3 conversion, but on French forums, many patients have this problem. Their TSH results are ok (around 1), but they still feel like hell, because their body can't transform their T4 into T3. Many people say selenium and zinc complements help the conversion... But, mainly, they get better when they are able to convince their doctor to try a T3 addition to their normal T4 treatement (here it's called Levotyrox)
Anyhow, you are surely well aware of all this, and my comment might be highly inappropirate. I hope you find a solution quite quickly ! Don't give up ! Best (excuse the spelling mistakes of a French speaker)
Have them check your testosterone levels!!
ReplyDeleteMost of these so-called "specialists" are ignorant, arrogant and uncaring - waste of time seeing them! Have you ever thought about buying yourself some T3/NDT online and self-medicating? There are some amazing Yahoo and facebook groups out there where the members can help with dosing etc.
ReplyDeleteHad similar experiences - have Hashimotos thyroiditis too, though nobody even now will confirm it. Was told I had depression and my thyroid was normal, which was an utter fantasy. I bought Thiroid from Thailand without prescription to prove them wrong, which it did....I felt better. In the end had to go private though and buy Armour Thyroid supplement via prescription. The NHS has let me down with their piss poor, non scientifically backed bullshit, backed by the GMC I might add.
ReplyDeleteHope you get what you need! T3 is a lot of the answer as long as you arent in a Hyper state - you can judge it yourself, blood tests are a guideline at best, not the whole story by any measure.
I wish I could come over there and give you a big hug! I've been where you are- years and years of it. Some of it while trying to raise 2 kids. I am just shy of 20 years with Hashi's and the majority of that was on Synthroid and not feeling well. I could have written the posting above. I was worse after I had my children. I finally paid out of pocket ($$$) for a doctor that is more naturally minded and got on Armour and then Naturethroid. I'm not running marathons or anything, but I do feel a lot better. I'm thinner than I've been in 18+ years too. Woo-hoo! I wish the same for you Hypoman! God Bless!
ReplyDeleteHi, This is Julie. I will figure out how to post as other than 'Anonymous' but I want to get this posted NOW! LOL
ReplyDeleteMary Shomon directed me to your blog ... HOORAY!!! Thank you so much! Someone else who gets it! ... OH, NO!! Someone else who suffers with this ... /cry ... I am so sorry.
The first thing I saw was your 'slide show'. That brief moment when you smiled was like sunshine. When you battle hypothyroidism smiles are soooo rare. It was nice to see you do have a beautiful smile and it has not totally gone away. My first laugh after I had been started on Armor Thyoid was so unexpected, felt odd, surpried me and was immediately followed by the thought, "I can't remember the last time I laughed!" I laughed again with simple, pure joy of being alive.
My journey to this point has been much like yours even though I am in the USA. I wish that Armour Thyroid had solved all of my health issues, but it hasn't. Do not misunderstand. Taking Armor Thyroid has been the single most important improvement in my life. If I had not found the medical practice that prescribed it I do believe I would be dead long before now. My life is so much better. When I look back, there is a huge gap where I have no memory, and many years of events are very hazy.
Like you I have found that good health practices help tremendously. Thanks to diet and supplements, and despite being overweight, my total cholesterol is great (158), and my glucose is well within normal range. But, like you, it has taken great effort and a long hard road to get me to where I am now.
Thank you for reminding us that we have to 'play the game' with most of our medical professionals. I had learned to despise every single one of the people who conspired to keep me ill. I hated the ones who would have let me die, and especially those who would have even hastened my death with their arrogance and air of superiority. I was at times unable to conceal my contempt when they told me, "All of your blood work is normal. I am going to prescribe an antidepressant. Change your diet and get more exercise." I was literally dying and they wanted me to "get more exercise"? I was furious. But, as I left their offices the fury died and I was just tired and defeated. I lost way over a decade of my life and I will never forgive the ones who did this to me, but I do not waste time on them. Instead, like you, I try to educate everyone I possibly can that thryroid disorders, especially hypothyroism, are not simple to treat. I emphasize that each of us has to be our own advocate and work within a corrupted system of poorly educated medical professionals.
Thank you for your wonderful blog. Thank you for sharing your intimate details so others do not feel so alone in this battle for good health. May tomorrow always bring good news and better health.
I'm so sorry your new doc was so disappointing. I finally found a doc (osteopath) who has hypothyroid and Hashimoto's as well as food sensitivities (and her son is extremely intolerant of gluten), and that's what it took to get a diagnosis and open-minded treatment. After being diagnosed with hypo in 2008 and Hashi's soon after, it was a good two years of getting the meds right. I thought I would share something with you that has really helped me: the time I take my meds really matters. I take a portion of Levothyroxine between 11PM and midnight, take a large dose of Armour abou 6:30AM [don't eat for at least an hour and even then no caffeine or dairy for 2-3 hours], and a smaller dose about 2-3PM. Armour alone wasn't quite working for me (I would come home from work and go face down in the pillow for 2-3 hours, sleeping like the dead), but Levothyroxine alone makes my joints hurt something terrible. Prior to the cocktail I'm on, a compounding pharmacy made up a capsule with both T3 and T4, but my liver really didn't like it. That was before I went gluten-free, and I think the filler in the capsule may have contributed to how my body processed the meds. Right now my thyroid numbers are about the best they have ever been, but some other issues--adrenal is one and food sensitivities are another--need to be dealt with. It's always something, isn't it? I'm glad to hear you're doing the gluten free diet. I miss some of those foods and it's a real pain for family gatherings, going out, etc. but I feel so much better without gluten. Thank you for sharing your experience, Robert. That's gotta be worth some decent karma for you.
ReplyDeleteHave you ever tried Homoeopathy? I have looked through your posts and I can't find this word, so maybe not. If not I would really suggest this for all the various symptoms and your emotional state, also for the sleep issues. I am also hypo and it works for me! Easy to find a registered Homoeopath and not even expensive. Worth a try, eh? Best of luck to you. Shawn
ReplyDeleteI am so sorry for you (and myself). I know we are meant to be brave/positive/stoical etc but sometimes like you I just feel PISSED OFF.
ReplyDeleteI have an appointment with my GP this afternoon. Am not expecting much. My mother-in-law keeps saying that I have to make them understand how ill I am so they'll do something to help me. She doesn't understand that the only thing they offer is thyroxine. Like you they have tried to blame depression so many times YES I am depressed - because I feel like shit!!!
High vitamin D levels may be explained by slow crearance, hence slow metabolism caused by you know what, hypothyroidism. Doses of prescription drugs and alcohol have to be lowered for that reason.
ReplyDeleteMy two cents.
François Isabelle
St-Hubert, Québec, Canada
I too have Hashimoto's
ReplyDeleteWhen I was first diagnosed my T4 was 26!!
Now they are suggesting I have my Thyroid completely removed as it's not doing anything for me and very swollen :-(