I don’t have my test results handy and will post later. I know a few weeks ago my TPO antibodies were high and the private GP I saw said Hashimotos but the private Endo I was referred to re tested with the other thyroid antibodies tests and these have come back in normal range. Is this unusual- what could this mean? Any thoughts anyone?
She thinks I became v I’ll due to a virus that could have attacked the thyroid. I’m on 50mcg but she’s unwilling to increase at this stage. I’m back in two weeks as she checking female hormones etc sorry I don’t have levels I’ll ask when I’m back.
That is a starter dose and you should be having a blood test after 6 weeks and then an increase of 25mcg until you feel well. How are you feeling? Also what are these normal Thyroid blood test results?
I’m feeling a lot better than I did but not back to normal. If they won’t prescribe a higher dose it’s difficult to know what to do. My GP won’t and now nor will my private Endo??
Also bloods should continue to be retested every 2 months until STABLE. (Not in a year as GP said)
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin B12, folate and ferritin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
I agree re an increase. The private Endo wouldn’t increase and not will my GP so I’m stuck.
She has given me high dose vitamin D as this was low and has checked B12 etc and cortisol. I will ask for a copy of my bloods so I can post on here.
I’m just confused as to why my TPO can be high but the other antibodies read as normal range so do I have hashimotos or not? Is us usual for these to contradict. The previous doc had done TPO and said hashi, but the Endo said the other antibodies needed checking as well as these were the ones that indicate autoimmune.
I think if the antibodies she tested came back high I would have been given an increase in Levo as she’d said this in the last appt.
Any ideas?? I know it’s difficult without my results.
Most hashimoto’s patients either have high TPO and high TG antibodies or just high TPO antibodies. In either case NHS recognises that this confirms autoimmune thyroid disease....aka Hashimoto’s
Frequently patients who ONLY have high TG antibodies struggle to get Hashimoto’s diagnosed
Recommend getting full thyroid testing. Just dosing according to TSH is utterly useless
And for the quick reply. I’m back in 2 weeks so am going to ask for full thyroid panel again and will ask directly why my TPO was high and ask if she can explain what this means- she did say she wasn’t sure if I actually needed Levo. My GP and the Endo both seem to think I have had a very bad virus and am suffering from post viral fatigue- plus they’ve not communicated as my private Endo is a self referral.
I’m somewhat confused by all of this if I’m honest.
I’ll try and get copies of my bloods and post headlines on here.
If your TPO antibodies are high, then you have Hashi's, no matter what your private endo thinks. I'd be interested to see what these other antibodies are she's tested. There's only one other antibody test for Hashi's, and that's Tg antibodies. Can't imagine what else she's tested.
I think she must be a bit confused, because TPO antibodies being high does mean you have an autoimmune problem, just by themselves. But, are you saying that your TPOab were in-range on the second test? If so, that's not surprising because antibodies do fluctuate all the time. But, you only need one over-range result to confirm autoimmune. It doesn't go away just because the antibody level reduces.
Yes I think she did the Tg but I’ve requested paper copies today so I can see what’s going on. The first doc said Hashi- can’t see him saying that for no reason?? She did say it looks like the start of thyroid disease. I’m going to review my levels post on here and be ready with some questions to go back with to the next appt.
thank you for your response- again! It means a lot to be able to get advice x
He did say that for a reason. If you have over-range antibodies just once, it means you have autoimmune thyroiditis. And that doesn't go away. It's the second endo that doesn't really understand it. She cannot possibly know if it's the start of thyroid disease or if you've had it for a long time. The tests cannot tell you that. She's just guessing.
Endo is described as thyroid/ diabetes specialist. I’ll continue for a while, but if I still feel unwell and need more Levo I will post for recommendations on this site for another local recommendation.
I believe that these people are specialists for a reason, but it’s difficult to accept that I’m in normal range but feel far from it.
I’ve never had post viral fatigue so hard to know if this is what I’ve had, I just can’t imaging you can feel that poorly with it? But I bet there are some in here who would say it absolutely can. I know CFS can be debilitating.
Asking for an increase, I felt like I was begging for some illicit drug. It’s not like we actually want to be hypothyroid, is it? Why do doctors want to avoid at all costs increases in dose?
As a SlowDragon posted the link to the guidelines- replacement dose!! Unless over 65 and heart disease and then go slow. You would hope an Endo would have read and adhere to this?? I’m stumped 🤔 x
I believe that these people are specialists for a reason
What reason do you thing that might be? Due to their training? They might have had training in diabetes but not thyroid. No doctors are well trained in thyroid. But, anybody can call themselves a 'specialist'. Does mean they know much about it.
I’ve never had post viral fatigue so hard to know if this is what I’ve had, I just can’t imaging you can feel that poorly with it?
Well, you can. And being hypo makes any infection worse, and the recovery period longer and more difficult.
You would hope an Endo would have read and adhere to this??
Yes to all of the above! I’m naive I think as felt an Endo would be up to speed and would not see any risk in upping to see what happens as I’m not even in a therapeutic dose yet. Seriously, I’m baffled. And the post viral and hypo makes sense grey goose- I’m sure primarily thyroid but have a friend who took years to recover from glandular fever and CFS so can see how this would impact it’s just it’s never happened to me before. I’m trying to keep faith xx
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