Hi, anyone who responded to my post about my GP cutting my 150mcg of levo t4and 20mcg of lio t3 to 100mcg levo alone will know the problems I have been facing, but I finally got my last blood results today and wanted to know what if anything you lovely people could give me in feedback. these results are from last Nov when I was on the above doseage and I have been on the 100mcg for about 6 weeks now. I can see that my tsh was very suppressed, so I'm not surprised the GP wanted to cut my t3 but I didn't consent to having my levo slashed as well.
Free t3 5.2 pmol/L range 3.1 - 6.8
Serum tsh levels 0.01 mU/L range 0.27-4.2
Serum free t4 16.4 pmol/L range 11-25
am waiting 3-4 months for my tsh to come up again before a be blood but what should I be asking my GP to test for at that stage? I've never been tested for hashimotos, are there any other variances I shd be annoying my GP by requesting. I seem to remember that when tsh is ok they don't automatically test the free 4 and free t3, is that correct?
Alos does can anyone pm me with the names of endos in Carmarthenshire, South Wales, I don't imagine anyone can but thought it worth asking.
Thank you for all your help. Ps I have M.E/CFS for the last3 years, hypo since 1994.
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sulamaye
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Sulamaye, those results are entirely consistent with what should be expected when someone is taking T3. Your GP panicked and recklessly reduced your medication, IMO. Decreases and increases are supposed to be in 25mcg increments and follow up blood tests done 6/8 weeks after every decrease/increase. Your TSH will have risen within a couple of weeks after reducing your thyroxine.
FT3 is unlikely to be done by the lab unless your TSH is suppressed but you should still ask for TSH, FT4 and FT3. You can ask for thyroglobulin and thyroid peroxidase antibody tests for autoimmune thyroiditis (Hashimoto's) but as 90% of hypothyroidism is caused by Hashi you could also assume that's what you have.
More important, in my view, is to check the status of your ferritin, vitamin D, B12 and folate. These are often low/deficient in hypoT patients and cause fatigue, musculoskeletal pain and low mood.
Hi clutter, I've just double checked the pulse article and Tofts def says ' while taking both hormones it is important serum tsh is normal and not suppressed.'
He is referencing both t3 and t4 so now I am really confused. Why does everyone here say it's normal for t3 to suppress tsh and that it's ok as supported by Tofts article, but the article says what my GP thinks, that I'm over dosing with a 0.01 tsh level? Does anyone else know ?
Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSHand then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
Yes but he's talking about suppressing it to no lower than 0.2, he then goes on to say what I quoted earlier, implicit in this is that my reading is too surprised, do you see what I mean ?
Sulamaye, 0.2 is not suppressed. He is talking about a reading of 0.01 or something.
Besides, Toft has got it all wrong. If you take T3 your TSH is going to be suppressed.
But what Toft doesn't understand is that a suppressed TSH is meaningless. Once you are taking thyroid hormone replacement, the link between the thyroid and the pituitary is broken and the TSH is useless. It really shouldn't be used as a test for dosing but for political/money reasons, it is.
Your doctor was wrong to reduce your dose like that just because of your low TSH because your FT4 and FT3 weren't too high. Both could have been higher without any problem. Especially your FT4.
I do hope that you get your proper dose back again soon. It makes all the difference.
Thanks yes, but mine was 0.01. I know it's all crazy I had no symptoms of hyper but they are more concerned about the unlikely event of stroke or heart attack if hyper, when being 3 stone heavier than I was before I got M.E and am too ill to exercise properly etc is far more of a risk factor. Having discovered I have no right to be referred to consultant in Cardiff the only option is to self medicate that, but I'm not doing that until they take my next bloods.
Sulamaye, mine has been 0.01 for years! And I'm still here. lol And I have absolutely no symptoms of hyper, either. It doesn't matter. You cannot be over-medicated if your FT3 is in range. That is the absolute truth. Unfortunately, so many doctors are ignorant of this and get into such a panic if the TSH gets low. But don't YOU worry about it.
Of course you've put on weight if you're hypo, most people do. And exercising would probably make it worse, because exercising uses up your T3 which you cannot produce for yourself.
With doctors like yours, the only solution is to self-medicate - I'm in the same position as you. I have a doctor who prescribes some of my T3 but I top it up with my private stock. When he gets in a tizzy about my TSH, I just point-blank refuse to reduce my dose. And as he's not in the least bit interested in my B12 etc, I take my own suppléments. Otherwise, I'd be dead!
"More important, in my view, is to check the status of your ferritin, vitamin D, B12 and folate. These are often low/deficient in hypoT patients and cause fatigue, musculoskeletal pain and low mood."
Hmm... Currently I'm feeling very tired and have been experiencing muscle aches and pains that come and go (though maybe the statin contributes?) and find it difficult to concentrate.
As of 15 Jan 14:
Serum Ferritin 100ug/l (22.00 - 274.00ug/l)
Vitamin D 98 nmol/L (>50 nmol/L: Vitamin D sufficiency)
WBowles, Ferritin 70-90 is optimal and vitamin D 75-200 is also optimal. B12 421 isn't bad but it is recognised that neuropathy can be experienced <500. I'd supplement 1,000mcg daily methylcobablamin sublingual lozenges, spray or patches. Your folate would be better higher in range so supplement folic acid or methylfolate.
I suspect Statins may be causing your muscle aches and pains unless your thyroid or thyroid medication is low.
Adjusting doses of medication is not the best way to help patients with a thyroid gland problem, unless they show clear signs/symptoms of overmedication (not by the blood tests). I think for you to wait 4/5 months to see him again is ridiculous he can cause more problems for you but he obviously doesn't understand anything about metabolism, which is the job of T3 and which every cell in our body needs to function. T4 is only a pro hormone in inactive and T3 is active.
As soon as clinical symptoms appear, make an appointment and ask for an increase in levo. No wonder some people have to self-medicate, it's ridiculous. Some doctors are afraid of losing their jobs as the BTA guidelines are strict. Never mind the patients who are still unwell.
She wouldn't give a damn to be honest. Also I have M.E which makes it very hard to identify symptoms. In general my M.E symptoms crashed about 3 weeks after the drop in t4 and removal of my t3, tingling started, sugar crashing got worse, I generally started feeling pretty grim where I had felt the best id ever felt since hitting the M.E wall and of course energy is always on the floor, but M.E is so nebulous and my GP probably thinks that's psychosomatic so I haven't a hope of getting her to listen, she ignored my logic about reducing in small steps and testing after each drop. Take it from me we're dealing with someone very stonewalling, hence the need to know if I have an rights in wales to force a referral to this potentially supportive endo. Without any clear rights under NHS wales she ll tell me to whistle. I am going to move practices, but no one locally has a better reputation and I think it best to fight my battle with her first before making another GP relationships untenable. Which I consider the current one to be!
I feel for you very much, dealing with this doctor. It seems that all of us with hypothyroid are vulnerable to our dosage being dropped if we can't produce classic blood results.
What I want to write to you about is this hypothyroidism + M.E. thing. I have been there - for 19 or 20 years!!! It is rubbish!
M.E. is supposed to be a diagnosis of exclusion. That should mean that if you are found to have any other disease that could cause symptoms of M.E., then M.E. is excluded as a diagnosis. Hypothyroidism can cause all the symptoms of M.E.
M.E. has a long list of possible symptoms centered on fatigue and post-exertional malaise. None of it is distinctive. Each patient has their own pick-and-mix of symptoms off the list. As my local M.E. nurse said "One person's M.E. is quite different from another person's M.E.".
Research is now revealing a high rate of (very varied) alternative diagnoses for supposed M.E. patients. Personally, I think the hypothesis that people in what I refer to as "the M.E. community" all have the same disease, is looking very shaky. There is such a thing as chronic fatigue syndrome, yes, and it is a kind of very deep nervous exhaustion state, which can be self-treated successfully and need not be long-term.
Whether or not there is a distinct disease now called M. E., a double diagnosis of hypothyroidism AND M. E. is dubious because M.E. cannot differentiate itself from the thyroid disease.
An endo in England ruled out my thyroid as the problem with my m.e, and I have to say whist many of the symptoms do overlap many of mine are very different from anything I experienced when first ill from hypo twenty years ago. That doesn't mean being hypo hasn't fed into the whole thing I am sure it has. To my mind there is a possible link from bulimia, to hypothyroid, to infertile problems resulting in three major operations resulting in not recovering properly from last one 4years ago resulting in hitting the wall, 3 years ago and being unable to get out of bed.
I am furious that my GP doesn't give a damn about the potential impact on my m.e. I prefer that name as I agree with you some people simply have chronic fatigue, I wish I did I truly did. Before my lack of thyroxine kicked in I had for the first time in three years had two weeks where I more or less only had chronic fatigue, no other symptoms, then whoosh, all taken from under my feet! It is very difficult. Thank you for your concern.
I had the same thing with my new found 'nearly health' being taken from under me by a dosage reduction after a low TSH result. It was only then that I realized the tiny increase in thyroxine I'd had was responsible for my being so much more well and able. I can hardly express the grief I experienced when my health disability came back -- for an artificial reason. I'd been telling people that I had a whole new life -- then I hadn't! It was gone.
People with chronic fatigue syndrome often have other symptoms off the M.E. list like muscle pain, allergies and brain fog. Really, CFS, M.E. and fibromyalgia overlap, and some patient's diagnoses get shifted from one to another over time. I used to strongly prefer the term 'M.E.' for the same reason that you do -- because it seems to do justice to the long list of disabling and distressing symptoms, whereas 'CFS' seems to belittle people crippled in life by this sort of thing. But what if every person with 'M.E.' actually has a different disease? ! What if an M.E. diagnosis does no more than block the way to a correct diagnosis which would carry a treatment? One writer in Action for M.E.'s magazine described M.E. as a diagnostic siding that people get shunted down.
I guess some hypothyroid symptoms develop with time and may not appear at the beginning.
So how are you now and has your medication and thereby your 'M.E ' been resolved and if so how?
How would you describe your symptoms out of interest?
"Only Free T4 and free t3 should be [tested?] and they should be in the UPPER QUADRANT of their ranges"
Interesting. My last test (23 Jan 14) showed Serum Free T4 of 19.4 pmol/L (10.00 - 23.00). Unfortunately, Free T3 never gets measured, even though I've asked for it. Serum TSH does get measured: 0.20 mlU/L (0.27 - 4.20mlU/L)
I really wish you were right because if that were the case I would self medicate from my stack of t3 that should last me a few weeks and if you're right I'd be feeling well within a few weeks. However, a) I can't do that until I've had a blood test under the new regime else I'll never get anywhere they'll drop me lower and b) I suspect it isn't that simple, but once I've had my bloods check I will try it out and see.
Does anyone know how long it will take for my tsh to come up again etc I don't want to have bloods before my levels are at their worst, else I will fail to prove a point?
Ps I injected myself with huge amounts of b12 when I was first diagnosed with M.E it did nothing for me.
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