I’ve been back and forth with blood tests for over a year. I was referred to a specialist at the start of the year who said I was borderline and from previous blood tests going back 9 years he said my levels were the same. 2 months later I’m still borderline hyperthyroidism but my symptoms match the hypothyroidism as well. For instance I’m gaining weight, reduced libido, restless legs, and my mental state of solitary and being lost in my thoughts, etc. He’s put me on 10mg carbimazole and I have to go back in November. To say I’m confused is an understatement. Can anyone help with some advice?
Thanks
Maria
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Mariaefc
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Maria, do you have a copy of your blood test results? It's very important that you know what exactly was tested and what the results were, because personally, I don't believe in their idea of 'borderline', especially not when it's hyperthyroidism. And, if this so-called 'specialist' hasn't done the right tests, he has no business putting you on carbi. So, if you haven't got the results, you really should get them. If you live in the UK it's your legal right to have a copy.
Maria, you are not hyper. Your FT3 is high, yes, but not over-range. And your FT4 is not much over mid-range. It's just that your TSH is low, and that's about all he looked at.
The 'more' we need to see is if there are any antibody tests. They might be more difficult to spot on a blood test, because they might be called by their full name or by the initials. Do you have anything that looks like TPOab/TPO antibodies/Thyroperoxidas ab or something like that? Or TgAB/Thyroglobulin antibodies? Or TRAB or TSI?
OK, so that's the next step, get your antibodies tested.
TPO antibodies are for Hashi's.
TRAB or TSI are for Grave's.
TgAB can indicate either Hashi's or Graves, depending on how high they are, so doctors don't usually do them.
You say that the specialist said your levels have been the same for 9 years? Exactly the same? Because that's difficult to believe, too. These diseases progress. If you have either Hashi's or Grave's, I doubt it will have stayed the same all that time. So, further investigation is imperative. And, it would help if you had those other results, too, if you can get them. Doctors are notoriously bad at reading blood test results, so you can't just take their work for anything to do with thyroid.
Yes, it will for the TPO and Tg antibodies. However, there's only one company does Grave's testing, and I believe it's difficult to find the link once you're on the site. You might need to ask for help in a new question to find that. I know SlowDragon has found it before, perhaps she could help?
I don't think you can just stop taking them, I think you have to wean off them slowly. But, I think your endo is totally wrong to leave you on them until November! I thought that those on carbi should be tested every four weeks. Things can change so quickly, and make you feel worse. But, don't decide to do anything until you've seen the antibody tests.
I see. Well, in that case, I - personally - wouldn't take any more until you've seen the results of your antibody tests. A few more days isn't going to make much difference if you do have Grave's, but my money is on Hashi's, and carbi wouldn't be the right treatment for that.
Thanks for replying. The specialist is a endocrinologist at the hospital. Do I request from them or will my doctor have them? I’m so confused with it all.
Sorry I didn't see these, but as you probably worked out for yourself, you need to click on the blue Reply button so that I'm informed that you've replied.
I’ve been to my doctor this morning as my Vit D is high, ive questioned the tablets carbimazole I’ve been prescribed and she says it’s correct. She says the consultant is right in the diagnosis of hyper, and I need to stop looking for internet doctors. It’s not possible for me have Hashimoto. God I’ve come away more confused.....
Anyway I’ve contacted the drs receptionist who is looking at my prior blood tests for TGAb and TPOAb.
Sorry to say this, but I doubt your doctor has any idea if your endo is right or not, she just doesn't want to contradict him. Seems as if she, too, is just looking at the TSH.
Did you ask her why she's so sure you can't have Hashi's? Why would it not be possible? On what information does she base that statement? That's what I would want to know. If they make statements like that, they should be prepared to back them up. And, unless the Grave's antibodies have been tested positive, she cannot back it up in any meaningful way. It's just a guess.
She says I’m Hyper and touched on Graves. She says my antibodies have been done in June and I’m 0.04 or something. I gave up in the end fighting a losing battle. She said wait until November and go with a list of questions to the Endo.
I can go and get a private diagnosis as my health care covers up to £200 I might look into that.
If your antibodies were tested in June, get your results for June and find out. You need to know the name of the test/antibody, and the range, not just the result.
However, even if you do have Grave's, you can still have Hashi's, so that was rather a stupid thing to say.
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
high TPO or high TG antibodies can be due to Hashimoto's
Hashimoto's often causes low TSH and high FT4 and/or high FT3
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
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.
Medichecks also offer Private testing for suspected Graves - TRab antibodies
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If TPO antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's or Graves
Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once if Hashimoto's is suspected And TSI antibodies if Graves is suspected
Thank you, very useful. I’ve just had a call from my doctors to request a tel appointment as on my bloods test my Vitamin D is high. 129.9 nmo/L 50.0 - 125.00. The endo never mentioned it yesterday. It’s in bold on my results to question this too. Could this be linked?
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