My TPO antibodies are repeatedly raised (87 IU/ml) but I have normal T4 (20.3 pmol/L) and TSH (2.78 mlU/L) - blood test from the end of January. A recent scan of my thyroid last month showed a "diffusely enlarged thyroid gland with diffuse heterogeneous echotexture and subtle nodularities".
My GP has repeatedly stated that I do not need to see an endocrinologist and feedback from advice and guidance is that because my thyroid levels are within range I do not need to be concerned.
I suffer from other symptoms that align with thyroid conditions such as excessive thirst (6L+ water per day), constipation, hand tremors, and night sweats which I have had for the past 5 to 8 years. I developed tension headaches in July last year for which I take 10mg Nortriptyline every night. I then developed heart palpitations in October last year which are sometimes worsened when I drink alcohol/. I take 40mg Propanolol three times a day which helps. I also suffer from brain fog and lightheadedness when standing, more so when in social situations. I can sleep for 10+ hours if I don't set an alarm and always struggle to get out of bed on a morning and also have waves of excessive fatigue during the afternoon sometimes.
I have had multiple ECG's done and a 48hr holter monitor fitted which came back clear. Before having the holter monitor fitted I came off the propanolol which made the lightheadedness when standing much worse. My blood pressure was lower when standing and so my GP reduced my dose to 10mg three times per day as they thought the propanolol was causing this. I stated that these symptoms had developed since coming off the propanolol and that I didn't think it was to do with the medication. I have since gone back up to 40mg again on my own back and feel better for it, although the lightheadedness is still worse than previous.
My GP has since referred me to ENT due to the enlargement of my thyroid gland but repeatedly states that I do not need to see Endocrinology as my thryroid levels are normal. They suspect it could be anxiety, however I do not think this is the case as I have never suffered with anxiety previously - I have described it as my body feels anxious but mentally I do not.
I have private medical insurance which won't cover my ENT referral, however they expressed that I would be better off seeing Endo as my symptoms are thyroid related. They did not believe it was anxiety and couldn't understand how ENT would help. They expressed that the TPO antibodies indicate a thyroid condition.
I am more than willing to pay to see an endocrinologist if that is what's needed, however since my GP keeps saying that they won't be able to help I am unsure as to what to do. I have looked up my symptoms and it keeps referring to Hashimotos due to the TPO antibodies, however I would have thought it was more hyperthyroidism with the heart palpitations, excessive thirst etc.
Would it be worth me going to see endo, ENT or would cardiology be more appropriate? It has got to the point where I don't care how much it costs in all honestly, I just want to feel myself again!
Any advice would be greatly appreciated.
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JxckH1nd
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OK, so first off, if you have high TPO antibodies you do have Hashi's. And your doctor sounds exceptionally ignorant!
So, you say you have 'repeatedly' high antibodies, meaning how many tests? And is your FT4 always around 20, and your TSH over 2?
The thing with Hashi's is that levels can jump around due to the nature of the disease. So that high FT4 is probably not your normal FT4 reading. And having an enlarged thyroid is another clue that your doctor is missing.
My GP has repeatedly stated that I do not need to see an endocrinologist and feedback from advice and guidance is that because my thyroid levels are within range I do not need to be concerned.
Well, he's right in a way - but not for the reasons he thinks! The majority of endos are diabetes specialists who know nothing about thyroid. So, it's unlikely a bog-standard endo would be able to tell you much more than your GP. But he's wrong your thyroid levels. Your TSH - which isn't even a thyroid hormone - is within range but too high. A 'normal' (euthyroid) TSH would be about 1. Over 2 means your thyroid is struggling. And also suggests that your FT3 could be low, but he hasn't even tested that. Have you ever considered getting private labs that will also test your FT3?
I take 40mg Propanolol three times a day which helps.
Not a good idea because propanolol affects conversion of T4 to T3, making you more hypo. Ask for a beta blocker that doesn't affect conversion, there are plenty out there.
My GP has since referred me to ENT due to the enlargement of my thyroid gland
Well, that's pretty stupid! What are they supposed to do about it? lol Before I knew I had Hashi's I consulted an ENT who didn't seem to be aware that the thyroid gland was right next door to the throat! lol But, I suppose it could be something to do with assessing you for surgery should they think that that is necessary.
I have looked up my symptoms and it keeps referring to Hashimotos due to the TPO antibodies, however I would have thought it was more hyperthyroidism with the heart palpitations, excessive thirst etc.
Do you know how Hashi's works? It swings between hypo and false 'hyper' levels as the dying cells deposit their stock of thyroid hormone into the blood. But you're not 'hyper' at the moment. However, hypo and hyper symptoms can be very similar. But in the end you will be fully hypo.
Would it be worth me going to see endo
Frankly, at this point, I don't think it would. In any case, before doing so you would need to have full thyroid testing, which includes FT3. There's no cure for Hashi's, and no treatment for the autoimmune aspect of the disease. All that can be done is taking thyroid hormone replacement, which you wouldn't appear to need at the moment, your FT4 being so high - no doctor would give it to you right now, anyway. And the only thing you can do for yourself is get your nutrients tested - vit D, vit B12, folate, ferritin - because they are all probably low and causing symptoms. And they would need to be optimal before starting thyroid hormone replacement, anyway. So, ask your GP if he can test those, then post the results and ranges on here and let's have a look. We'll see what we can do to help.
In November 2024 - TPO of >1300 (reference range: <61), T4 14.6 and TSH 3.34
In January 2025 - T4 20.3, TSH 2.78 and TPO 87, however I think the TPO is using a different figure than the one previously as the ranges are different.
In February 2025 - T4: 16.9, TSH 3.3
I have had FT3 tested twice last year at my old surgery but I don't have access to those results. It did come back abnormal, higher than normal both times, but as my T4 and TSH were fine they told me not to worry. I am going to call them and ask for all previous blood tests tomorrow.
Do you think it would be worth paying to see an endocrinologist?
Drugs that may decrease PTH include cimetidine and propranolol.
You must NOT suddenly stop propranolol. It has to be reduced VERY VERY slowly
Discuss with GP alternative options to propranolol
I came off the propanolol which made the lightheadedness when standing much worse. My blood pressure was lower when standing and so my GP reduced my dose to 10mg three times per day as they thought the propanolol was causing this. I stated that these symptoms had developed since coming off the propanolol and that I didn't think it was to do with the medication. I have since gone back up to 40mg again on my own back and feel better for it, although the lightheadedness is still worse than previous.
this suggests that propranolol was reduced too quickly
Likely to take 4-6 months to ween off
Then retest thyroid levels after minimum 6-8 weeks without any propanol or
Low blood pressure is a hypothyroid symptom
Request GP test vitamin D, folate, ferritin and B12
Thank you for your response. So do you think the propanolol may be interfering with my thyroid levels? What would be the benefit of coming off this and on to another medication?
Ferritin levels are 136 ng/ml. I haven't had tests for the others mentioned.
When I do not take 40mg propanolol my heart palpitations worsen - even on 10mg they were more apparant. Would these be caused by hashi's? Is it a case of reducing the propanolol and substituting with another beta blocker at the same time?
Also, would you therefore expect my other symptoms to improve, mainly the lightheadedness, once substituted for a different medication as it wont be interfering with my thyroid levels?
I am struggling to understand how propanolol would help the palpitations but also interfere with my thyroid levels which would worsen them? Have I misunderstood?
I was stuck on propranolol (4 x 10mg) for 20 years with Hashimoto’s…..more on my profile
propranolol slows down how you use thyroid hormones……so even if hypothyroid it will slow/stop you using the thyroid hormones you are making …..you will be hypo but when you do blood test….. everything looks “normal “
When reducing dose propranolol it needs to be done incredibly slowly
I have spoke with my GP and he has put me on bisoprolol 2.5mg once daily. He has advised to come off the propanolol over 3 days - 120mg, 80mg 40mg, followed by two days of no beta blocker before starting the bisoprolol.
I have requested a full thyroid and vitamin level check, however my vitamin levels were "within range" in November 2024 so he was reluctant to test again. I will pay for a full thyroid and vitamin private test after being off the multivitamin and propanolol for 6 weeks.
I am planning on paying to see an endocrinologist but would it be better to wait until I have had the blood work done once being off the propanolol before seeing her? Atleast then the bloods would be a true representation of my thyroid levels and give better evidence to work from.
I have been referred to see a cardiologist for a POTS assessment but I do not think it is that. The lightheadedness only worsened dramatically when I came off the propanolol - it only used to happen previously if I was in a situation where I would be anxious whilst standing.
That’s an extremely quick withdrawal of propranolol
Stopping propranolol will significantly change how you use your thyroid hormones
I will pay for a full thyroid and vitamin private test after being off the multivitamin and propanolol for 6 weeks.
I am planning on paying to see an endocrinologist but would it be better to wait until I have had the blood work done once being off the propanolol before seeing her? Atleast then the bloods would be a true representation of my thyroid levels and give better evidence to work from.
Hi Jack. really feel for you. Beta blockers are not a good idea to be honest. Propranolol is one of the worst for lowering thyroid conversion from T4 (storage hormine) to T3 usable form of thyroid hormone. It made me very ill and it also changes your blood pressure......mine went up mainly because my T3 went down causing pslpitations.. I suspect your ft4 is falsely high because of the slowing of conversion.
You do need to come off Propanolol slowly. The dizziness you experienced was probably from stopping suddenly rather than a sign you need to be on Propanolol. That's why you need to wean off slowly. Shame your GP wasn't aware.
All beta blockers to some degree lower thyroid hormone conversion. Some are worse than others. I tried three. They all made me very ill. Cardivilol I was told was heart specific. I've got go say I was still ill on it.
I think until you are off the propranolol you wont really know what your thyroid hormone levels are really like. Your doctor was right.....but stopping suddenly mot great.
Palpitations can be because of high OR low thyroid hormones.
So I'd wean off the beta blockers and check your other factors such as b12 iron folate and vit D.
Seeing an Endo. You could try this but do your research very carefully about who you go to see. Most Endos are diabetes specialists rather than thyroid. You would probably have to go private as it's likely a nhs referral would be bounced back. Hence the GP refusing. I can certainly share the name of the Endo I saw. Message me. We are not allowed to name names on the open forum.
Thank you for your response. My concern is that when I am not taking the beta blockers my heart palpitations happen frequently - wether I need to be concerned about them is a different story.
When coming off propanolol to try another beta blocker did you need to completely come off one before taking the other or can you substitute the difference? I find that 40mg three times a day suppresses the palpitations well, all be it not completely.
I have not been tested for vit B12, folate and vit D so I will request these blood tests and see what the results are. Do deficiencies in those cause the symptoms I am experiencing?
You need a doctor to guide you re changing or stopping beta blockers. But if stopping it's best done slowly.
All I can say is beta blockers no matter what brand make made me very ill. I was switch straight over from one to another but under medical guidance. .
Re symptoms. If you look on b12d.org they have a symptoms checker. Some will over lap with Hypothyroidism....others don't. NHS like your b12 to be over 400. But many other would say at least over 500. Yours may be fine. Just needs checking as it can be low in hypothyroidism.
I would start to keep a daily record of sign symptoms what medication you are taking plus dose, any supplements plus dose plus temperature and pulse first thing. Just brief. It can uncover pattern when you look back.
Barry Durrant Peatfield wrote an excellant book called You and your thyroid. It's well laid out and explains it really well. Knowledge is power so recommend it to gen yourself up. You can pick up secondhand copies.
I also have more or less "normal" thyroid, according to my GP, but raised TPO.I experienced many of the symptoms you described, but it was only a bone profile test for another condition that showed mildly raised adjusted calcium.It may be worth requesting a bone profile and parathyroid hormone blood test. When both mine came back elevated, I was diagnosed with hyperparathyroid disease. I was also advised to watch and wait, but insisted I be referred for scans. The endocrinologist continued to describe me as "mildly symptomatic"! And scans showed an 8mm parathyroid tumour. I have just gone private, and had a 3cm x 2cm parathyroid tumour removed. They are 99% benign, but I need to wait for the histology report. My surgeon said that the tumour was stuck to my thyroid, which he said is clearly Hashimotos as it is so obviously "sticky" and damaged. Keep pushing for answers.
Thank you for your response. I had my adjusted calcium level tested last month which came back at 2.44 mmol/L which is apparently within range. I have also had a scan of my thyroid which showed a "diffusely enlarged thyroid gland with diffuse heterogeneous echotexture and subtle nodularities" which is what prompted the referral to ENT. I am unsure as to why my GP has said I need to see ENT and not endocrinology but I think it's because my thyroid levels are normal. Do you think it is worth paying privately to see an endocrinologist?
Why did they remove the tumour in your case? Was that what was causing your symptoms?
I had 15 months of being patronised! I educated myself about hyper parathyroid disease with the support of the brilliant hyper parathyroid uk facebook group. I never met my endocrinologist, had missed telephone appointments, months of delays, then a sort of plod plod approach. When he told me I had mildly elevated calcium and PTH I quoted the NICE guidelines, got him to agree that the only cure was surgery, and begged him not to insist I supplemented Vit D3 for 12 weeks, then a scan, then wait and watch. Luckily he agreed. But even when I was told my scans had shown a 9mm adenoma, there had to be a tumour MDT.I was described as "possibly symptomatic". To cut a long story short, he said he couldn't refer to a specialist surgeon. I pursued this myself via my GP the day before he retired(!) and was finally accepted by a specialist centre in the North West, had my first appt with a lovely endocrinologist who immediately agreed to refer me to the surgeon I had wanted ,but by February still hadn't even got the first appt with him, and I knew he had a really long surgical waiting list. So I went private. Had the op 2 weeks ago with an incredible surgeon. Who removed a v. large 3cm x 2ck parathyroid adenoma. I would use patient choice to say which endocrinologist you would like to be referred to, and find other people who have been through your experience. Don't give up, the poor old NHS isn't joined up, but advocate for yourself, even if it seems like are moving slowly. My symptoms were absolutely debilitating, I have been off work for a year, and hopefully the adenoma is benign. And if not, thank goodness its out!
I would recommend from personal experience finding a a doctor from the list provided by Thyroid UK that tests a full thyroid panel (including T3) and treats based on this AND your symptoms. If you would like the name of the doctor that got me well again please feel free to drop me a message and I will forward the name. I'm not a medical professional, but if you have high TPO levels and a damaged gland showing on a scan, AND classic symptoms of being hypothyroid.. I would personally say it's a no brainer that your thyroid is big part of what's making you feel so unwell. Trust your own instincts.. you know your own body best. They are very hard to find but there are doctors who will listen and give you adequate treatment. Don't give up. I was so desperately unwell, and kept being told it was all in my head.. it wasn't, and I'm back to (almost) full health now.
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Hashimoto's?
Hashimoto's?
Is this hashimoto's 
New to all of this! Any help appreciated. High TPO antibodies and high TSH 
At Last.... my results
