I was diagnosed with underactive thyroid 2 years ago and was on thyroxine for a year and was really ill. I tried NDT, but was still having dizzy spells, so I self sourced T3 only and was really well on it. I asked my doctor to refer me to an endo because he said he couldn't prescribe t3 even though my results spoke for themselves, but now I am under an endo, he has decided that I have been mis diagnosed altogether! To prove my point, I said ok, I will stop taking all thyroid meds under your supervision so you can see my baseline results, and he is now saying I am fine, even though I feel terrible and as far as I can tell, my results show I am still underactive.
My results were sent to me from my Endo as follows:
"...normal levels of free T4 and free T3 (11.2 pmol/l and 3.7 pmol/l respectively). The TSH is very slightly increased at 5mU/I but I would not recommend and resumption of thyroxine therapy with this overall blood test result."
Please can you tell me what you think of my results? I have brain fog, I sleep all the time, I am constipated, the dizzy spells have returned daily (multiple times per day) and I am losing hope for getting help.
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Ccuser99
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I don't think you have been mis-diagnosed with a TSH of over 5.0 but you really need to know whether you have thyroid antibodies or not. On what basis did the Endo say you have been misdiagnosed?
Your dizziness may be another problem that needs looking into as it could be caused by a number of things other than thyroid disease but your higher than normal TSH still indicates a failing thyroid. If you are very elderly then a higher than average TSH may be normal for your age group but if younger or middle aged then it's not normal.
Could you ask your GP to exclude all possible reasons for dizziness and ask him to refer you to a different Endo for a second opinion and get the name of an Endocrinologist from the Thyroid UK list of sympathetic Endos and ask for a referral to one of them based nearest to you?
I have been tested for antibodies and that came back all clear. He said I was mis diagnosed because my original results were unusual ie my t4 was really low but my TSH was low too, so he thought it shoul dhave been looked at as something else like a pituitary gland issue, but these are my latest results and all my other hormone tests came back as normal according to him.
My dizzy spells only happen when I am not on t3, even if I am on Thyroxine, they are still an issue but my t3 levels don't rise much even when on higher levels of t4, so I think I may have a slight conversion issue.
I am 38 years old.
That is a good idea, I have emailed Thyroid UK for a list of private endos so I am hoping to hear back from them soon. I can't continue this way it is crazy! I am not only feeling really ill, tired, dizzy, constipated etc, but I have also gained 3 stone in a matter of 3 months! I could litterally cry
If you were originally diagnosed with hypothyroidism why won't your endo accept that diagnosis? Do you have the original results that led to that diagnosis? They will be in your medical records if you don't have them.
Your symptoms would appear to suggest hypothyroidism, your TSH is over range and without the reference ranges for FT4 and FT3 we have no Idea where they lie in range but they are probably very low. So if your endo wont agree with the original diagnosis then subclinical hypothyroidism could be diagnosed with those results and symptoms. From thyroiduk.org.uk/tuk/about_... > Guidelines for the Use of thyroid Function Tests
"Subclinical hypothyroidism (where there are elevated TSH levels, but normal FT4 levels, possibly with symptoms) has been found in approximately 4% to 8% of the general population but in approximately 15% to 18% of women over 60 years of age" .
If you can't get anywhere with your endo, why not go back on self sourced T3 and not bother with the him/her?
0.44.0mU/L (milliunits per litre), FT4 9.025.0 pmol/L (picomoles per litre), FT3 3.57.8pmol/L (picomoles per litre). I was taking self sourced T3 thylexian and it was great, but we can't get it in the Uk anymore. I moved to tiromel, but i don't feel as well on it, so I guess if I could find a better T3 source, cytomel for example, then I could go back to self sourcing. I think that is my only option tbf If anyone can offer a UK source for cytomel, please could you DM me? I would be most grateful, thank you for your help
The reference ranges that SeasideSusie refers to are the numbers in brackets at the end of your result. For example TSH 5.0 (4.3 - 0.3), the numbers in brackets are the laboratory reference range. We need these to interpret results as lab ranges vary from lab to lab and country to country.
If your Endo thinks you may have a pituitary hormone problem then why hasn't he/she looked into it immediately? I still think going back to your GP to ask him/her to progress this and give you a referal for a second opinion is a good idea. Most Endo's are diabetic specialists and know little about thyroid conditions. You could Google your Endo to find out what their training and specialty is.
Getting the right diagnosis is important so that you can get the right treatment and also understand how to manage your condition. I'm afraid you're going to have to be persistent. Even if you have to book up a series of 10 min apts with your GP to discuss properly, just be persistent and don't give up. Keep going back because nobody is going to chase this on your behalf. You have to be your own advocate as though you were doing this for someone else.
I forgot to say, yes I think I do have my original result somewhere too, as well as the results for most of my tests over the last 2 years under my GP, who kept increasing my thyroxine as a result of the blood tests, so I don't understand how this endo can say there is nothing wrong with me
'Cos this endo is probably a diabetes specialist and knows little about thyroid. Many, many members are very disappointed by their referrals to an endo, most just aren't worth seeing and leave patients feeling worse than before.
As you have had all thyroid hormones stopped your vitamin levels are likely absolutely dire
Essential to test vitamin D, folate, ferritin and B12
If vitamins are too low, TSH can seem normal, yet you can be profoundly hypothyroid
Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies? If so low vitamin levels are extremely common anyway
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
Why not treat yourself by doing a Blue Horizon Thyroid 11 blood test it includes the thyroid , vitamin and minerals plus antibodies.
Post the results on this site include the ranges and also add what medication you were taking at the time. The blood drawn must by on an empty stomach. People would then advise you what action to take next to aid recovery
Have a look on the Thyroid Uk site who run this forum and print off the list of symptoms. Present these to your GP and if you go for a second opinion. The ranges in the UK are wide in any case. 0.3-3.0 for TSH is used elsewhere.
You can also read through the topics in the link above.
When you have a blood test you have to have the earliest possible, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test. This method keeps the TSH at its highest and may mean the difference between diagnosed or not.
I get so angry at these so called professionals, will they never listen and learn?
To me, you are underactive. Your TSH is only slightly elevated. I have been on medication all my life. I think you should be on it too!
My last TSH was 4.87 (0.27-4.2) I think, which was higher than before. My TSH level has been as low as 0.09 before.
T4 was in range, which was 14.8 (lower than before but in range 12-22) - so most probably slightly under medicated. They rarely test T3 and I am not worried as it keeps me on the T3 medication. I feel fine at the moment.
My current doses of medication = T4 is 200 mcg of thyroxine T3 = 20 mcg of Lithyronine.
I am being retested in a few weeks to make sure I am not under medicated.
I was once told by my silly GP the one that dramatically reduced my medication (paragraph below) "Too much thyroxine is bad for your heart, BUT (wait for it), if you are not getting enough, we give you the higher dose anyway!" But the silly Moo reduced my medication anyway and made me very poorly.
When they messed me around in my 30's and they did big time, they reduced my medication from 200 mcg of T4 to 75 mcg! and did I suffer big time - a whole rake of problems including massive weight gain. This went on for years. The times I was told I was lazy and needed portion control. I estimate that I gained around 100 plus pounds in a few months. I slept all the time and no amount of sleep was sufficient. Constant brain fog, which was not good with little children around at the time. I had really heavy periods amongst other things including jaundice and it was my gynaecologist that told me my thyroid was out of kilter and I was referred to one of her colleagues who was a Endo in the private sector (I could afford it then as I was on a private health scheme at work). The rest is history.
I like you, was so depressed and frustrated and still even now struggling with my weight. I also have long term damage to my legs because of oedema.
You are not on your own my lovely and like already suggested, go back to your GP and ask to be referred to a different Endo and one that specialises in Thyroid conditions. Never take no for an answer. One pill does not fit all, we are all different. Your thyroid can send you into the diabetic range if not on right dose as well. I am currently borderline. My Haemoglobin was 49. Hopefully that will go back to normal range at next blood test.
You might need to be checked for anaemia, B12 deficiency and vitamin D deficiency too. So ask for your ferritin and folate levels to be checked and also Haemoglobin. These conditions have very similar symptoms to thyroid conditions and walk hand in hand.
The trouble is with these specialists is that they read their information from a book, they do not listen to how we feel. You know how you feel as I know me and I would imagine at the moment, you feel pretty crappy and (excuse my french) f*#king frustrated and upset.
Rest assured, when your dose is correct, the weight will come off, may take a short while but it will. All we want at the end of the day, is quality of life, so we can lively reasonably happy and active - not too much to ask is it?
Message me anytime and don't feel that you are alone. We completely understand.
Oh dear I am morphing into my mum, bless her heart
PS As Shaws has already said, do not take any medication prior to a blood test as it does give a false reading.
Your endo is an idiot . .end of! I'm okay now but I feel so angry that there are these stories of under treatment and misdiagnosis . I thought things would have improved since the 70's/80's but it appears not and still the ugly head of sexism rears its head . . Mainly women, complaining they are tired, depressed, emotional, and worried about their weight and their hair . . .well why take that seriously? I mean, isn't that just women?? I sometimes think we need a back posse to accompany us to appointments. It's difficult to fight your corner when you feel so rubbish and your oomph has walked out the door.
My Endo, actually implied that my husband was an "enabler" because of my weight problem! His reply was far from polite and in the end he had to walk out of the room in disgust! I could have slapped her.
Kept on about how too much thyroid medication was bad for my heart especially the T3. (usual crap) Well "Hello" I have proven over and over again, there is nothing wrong with my heart or anything else other than the damage that these so called highly qualified, intelligent aholes have done in their "experience" I think it has got worse since the 60's/70's tbh and to our detriment.
One thing for sure, she was not professional and I did report her. All of it was denied and as usual they stood by her. But at least I got it off my chest lol.
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xx
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