Quite amazing. I sent my samples yesterday and have my results. But what is happening? My GP tested last week and said "it's ok". I don't feel ok. My Gran died of myxadema - so I decided to have this check done. The commentary from Medicheck says to contact your GP. I don't think she will be thrilled that I've had this done. Yes it's my health but my GP has the prescription pad!
You are subclinically hypothyroid with TSH over range and FT4 and FT3 in normal range. If you are symptomatic your GP should prescribe Levothyroxine.
In the presence of positive thyroid antibodies most GPs do diagnose hypothyroidism and prescribe Levothyroxine when TSH is over range. Read Dr. Toft's comments in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
I am on 150 mg Levothyroxin and have been on this doseage for over 3 years. I don't feel ill just lots of 'not right' symptoms. I have muscle spasms in arms, toes, swelling of eyes, weight gain, hair loss .the list goes on I'm afraid. I did not know about being Gluten free. This I will begin immediately
If you'd said you were taking 150mcg Levothyroxine I would have told you that you are undermedicated and should request a dose increase.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted Read Treatment Options in the link I posted above.
Have you been tested for ferritin, vitamin D, B12 and folate?
It is worth getting tested for coeliac disease before you go gluten free, some symptoms can be the same as thyroid symptoms. You need to have gluten in your diet for a coeliac test to be accurate, and it is harder to reintroduce gluten at a later date.
If you live in the uk, have you thought of asking for a copy of your results, the Doctor may say results are fine, but not always the case. You are entitled to a copy. Post results on this site for knowledgable people to check them for you.
My GP surgery rang go give my blood results and said Borderline. She I asked what it meant the clerk said I had to speak with my GP. I had a telephone consultation on Monday. She said the levels are fine. I don't feel fine. So I had my thyroid fully checked with Medicheck.
Always get copy of results, so you can keep them for future reference, I was told my B12 was fine when tested last November, retested myself with blue horizon, February found it had dropped to below bottom range and I am taking B12 tablets to correct made a big difference to how I feel.
If your GP is still iffy or do this anyway but this forum is recommended by NHS houces for thyroid dysfunction and the forum is run by Thyroid Uk so have a look at their site and print out anything that will support what we are saying. I'd like to see a doctor argue against NHS Choices!
Hi Amber, just to give you an idea of what 'ok, fine, normal' means...my thyroid was removed 2009 i gained 6 stone in 2 years for no reason, i became exhausted, all my joints hurt, my heels were so stiff i could barely walk and started slipping in and out of deep sleep, i couldnt stay awake for more than an hour. I went from competitive sports women to bed ridden and my dr didnt seem concerned.
I kept seeing my gp who just said i was depressed, obese, menopausal etc. I kept saying i hadnt been well since the operation but he said my thyroid tests were fine, normal, within range etc......i didnt have a thyroid and he had forgotten to give me any thyroid replacement medication.....obviously i was very ill and hypothyroid/Athyrotic.
My dr had forgotten my thyroid removed and my tsh never went above 6 so my honest opinion is i dont trust the tests, they often have no direct comparison to how you feel and in my case my dr was ill informed & dangerously stupid. I thought i would die so started doing my own research on support groups and started treating myself, within weeks the change in me was miraculous and my dr didnt recognise me!!!! obvs he apologised and in fact closed his practice 6 months later. We put all our faith in drs but the truth is they know very little about thyroid care. It is your health, your life and it is time to take control of what is happening to you. Get all tests done and results, the people in this group have been through it and can let you know what worked for them. I wasted a lot of time expecting my dr to get me well and trusting him!!!!! dont be fobbed off, if necessary change drs, do whatever it takes to get well xxxx
I am shocked by what I have just read. Very grateful youve replied to me and I am sorry for what you have been through. After being told I had Hashimotos I learned that my Grandmother had died from Myxadema when I was a child. Foolishly I've been thinking it wouldn't happen now. I shall act on your advice
You will read lots of stories like mine, i stopped being angry as it was too tiring, i should have taken control sooner but i assumed my dr knew what he was doing! We have to be the experts on our own health and how we feel <3 I dont expect drs to know everything but i do expect them to be honest and to refer when they are in over their heads!
I ended up giving talks to final year med students at the teaching universities about how little they know and how dangerous it is. So many physical clues they ignore as they rely on tsh test which according to the man who devised the test should never be used as THE only way to diagnose, it is 16% effective and misses all the other markers like pituitary problems, adrenal fatigue, no achilles heel reflex, mucin fat under the skin and all the ways they diagnosed before getting lazy. xx
You might have seen a couple of posts a month ago with people who were each stable after TT, but then each had levo taken away altogether after consulting new doctors. A similar reason in both cases was explained as a desire to find the patient's 'base level' of TH!
What a horrifying story, Endomad I have also had a TT and been without hormone a few times so I know how terrible it can be. I can't imagine it for more than a few months, tho.
Also very interesting to hear your TSH stayed so low. We also sometimes hear of people with very high TSH who don't have symptoms. Goes to show how useless it is
Wow, Endomad. Kudos to you! And sorry you went through all that, it sounds horrific.
I too was told I was 'normal'- but I did my own private testing, and my estrogen is too high- (which as I learned from a member on here), can interfere with T3 absorption. And my TSH/ T4 levels show hypothroiroid.
I have a history of brain injuries, and I learned from this forum that can alter test results as it interferes with TSH levels.
I am not fine! My skin is paper thin and dry, I'm exhausted, my periods are super heavy, I'm gaining crazy weight, my hair is falling out, my mental state is awful.
I'm seeing my GP this week and taking all the new info about pituitary disfunction and recent blood test results.
And I must say that this forum has been invaluable!
Phone surgery & say you WILL BE dropping in this afternoon to pick up a copy of your results. If any issues say you have an appointment with a consultant next week & he wishes to see them.
Do not see GP without having got your results & read & understood them. Otherwise you are at an instant disadvantage.
You may want to get Reverse T3 Test done privately as helps to show whether Levo is working for you or whether you need Natural Thyroid meds or T3
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 TSH and 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)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough levels of FT3
Your story is also quite horrible Before you mentioned you were on treatment already, we were all here ready to say you need a diagnosis (although may have to fight for one). So your doctor is keeping your treatment so low, and you so sick you are eligible for a new diagnosis. It's really outrageous!
The best practice is to have a dose increase, then blood tests 6 weeks later and adjust again based on those. I'd say you may need two or more increases to get your dose optimal, but everyone is different.
May I ask a couple of questions?
My GP surgery has its own range and refuses to accept any external ranges. Could/Might the OP's GP say the same thing as mine? If so, what does she need to say to her GP?
I see the Gluten /IBS/coeliac association. I haven't eaten any foodstuff, containing gluten for many years, but I still suffer from severe IBS/bloating, which got progressively worse. Could this (IBS) be a hypothyroid symptom, unrelated to gluten sensitivity?
The only range that should be used is the one the lab supplies.
You simply must not take a result from one lab (say their FT4 range is 7 to 14) and interpret it against the range from another lab (possibly, as here 12 to 22).
That would be rather like driving a car with a speedo in mph in France with limits in km/h. 110 mph would most certainly be likely to catch the eye of the gendarmerie in a 110 km/h zone.
So, in other words, are you saying that, pointing out any "normal ranges" suggested/provided by Dr Toft in his article would not be worth considering to do when you see a GP?
It is true that TSH ranges tend to be closer than others so perhaps slightly more usable. FT4 ranges vary, as I more or less pointed out, almost to the extent that the top of one range is below the bottom of another range. (Not sure if it is quite there - but very close.)
If Toft said something like "mid-range FT4" with a range 12 to 22, that would imply around 17. If your range were, say, 8 to 16, then the equivalent should be 12. But things are not as simple as this appears to imply.
As anything else, the reality is far more complicated than meets the eye. I have never heard of "mid-range", either. My GP start getting worried only if it goes slightly "out of range".
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