I've just had an appointment with a GP after my most recent blood test results showed a TSH of 6.21 and a TPO of over 100. I feel pretty awful. I haven't felt well since the beginning of this year, but my TSH was 3.87, so there was no way the NHS was going to treat that.
The doctor I had was incredibly condescending and arrogant and told me that TPO doesn't really mean anything, my TSH isn't that high (which I already know), and that I don't need an ultrasound because it isn't helpful in these instances. I told him that I had a PET scan in 2021 before cancer treatment that showed diffuse activity in my thyroid (which I think is indicative of Hashimoto's?), and he basically shrugged it off. He has agreed to put me on a trial of 25 mcg of Levothyroxine but said that none of my results over the past few years suggest there is anything seriously wrong with my thyroid (my TSH tends to be around 4) and that that's probably not what's causing my symptoms of fatigue, brain fog, cold extremities, heart palpitations, puffy face, etc.
I left the appointment feeling like I'm stupid and mad. I guess I'm just looking for some reassurance that I'm not! I am pretty sure those antibodies suggest Hashimoto's?! Should I go for an ultrasound privately? Is this the only way to truly diagnose Hashis?
Thank you!
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Wtf?! You have elevated TPO antibodies therefore you have Hashimoto's thyroiditis. You have an elevated TSH, therefore you have hypothyroidism caused by Hashimoto's thyroiditis. PLEASE BIN THIS JOKE OF A "DOCTOR" IMMEDIATELY. He doesn't know what he's talking about!
Find another GP who listens, shows respect and is knowledgeable enough to treat Hashimoto's. This may mean calling around a few GP surgeries (look on Google Maps for surgeries near you and check the reviews). When you call or visit them, ask the receptionist "Hi, I have an underactive thyroid and I'm looking for a GP with experience treating hypothyroidism and who listens and believes what I say. Please can you recommend someone from this surgery?" The response you get will tell you everything you need to know about whether to register at that surgery.
Don't waste another second on your current GP. He will make your life hell.
They are really good at making you feel like you're going mad! I'm sure it's to cover up their own ignorance. It makes you feel like crap and (if your like me) then spend month's looking at other possibilities and £££ seeing people privately. I'm so angry for all of us.
I don't know about the scan situation. I've not had one but been now diagnosed with Hashimotos due to high antibodies.
My TSH was similar to yours when I started on 25mcg (was like pulling teeth to get it). My TSH then dropped to 4, then 3.. that's where I am a year later and still trying to get upto a therapeutic dose and feel better.
I've read some of the studies on TSH and the vast majority of the healthy population have a TSH of 1 - 1.5. God knows why we have to wait until it's so high. I can see mine was 4-5 about 10 years ago but nothing was said and they let me carry on trying for a baby.
See if a different GP at your surgery is more sympathetic? It's so wearing and I got fed up of arguing so I've gone private now x
Hello Dahliasanddaisies, please can you post where to find the TSH studies on normal TSH levels - I have had thyroid issues myself and am trying to help a relative who is suffering from exhaustion, heart palpitations etc and has had a TSH of 3.09. She’s been repeatedly told by doctors that it’s normal. I don’t think it is and I know that if my level was that high I would feel terrible. It would be helpful if I could let her know about the studies so she can see for herself that TSH of 3.09 is not normal.
Initially the level of TSH was set by testing 17 men. The vast majority of the population have a TSH of around 1-1.5, so 3.09 is indicating that the thyroid is struggling. I would recommend your relative takes a full thyroid panel test privately (lots of info here) and include a vitamin test. Your relative will continue to struggle and get worse unless they can find a doctor who knows something about the thyroid. Good luck!
Sorry I can't remember it was a while ago. It's worth checking they have followed testing protocol (fasted and before 9am) no biotin etc to ensure they are getting a true TSH level. Maybe you could encourage them to do a finger prick test which includes all the thyroid markers?
I dont know how old you are but unless elderly or you have heart condition then starting you off on 25mcg is setting you up to fail. Levothyroxine doesnt top up your own thyroid output, it replaces it.
My suspicion is he's given you a tiny dose so that when you say it hasnt helped he will say its definitely not thyroid related, and probably try and fob you off with antidepressants.
Unless you start off on 50mcg its likely that on such a low dose you will feel worse. 25mcg is a very small child's dose. We normally start on 50mcg and increase by 25mcg every 6-8 weeks. It can take months to end up on a full replacement dose.
I'm afraid you've experienced the reality that many forum members see, poorly informed, poorly educated GP's who dont have a clue about how to treat thyroid disorders. But rather than admit their ignorance they gaslight patients. If I were you I would ask for a second opinion and avoid this idiot.
These replies have made me feel much better and stronger. It's crap that we're all in the same boat being gaslit left right and centre, but it's nice to know I'm not alone!
He did seem extremely ignorant about the whole thing, and I also got the sense that he was trying to push me towards antidepressants, which I know I don't need!
I'm definitely going to take your advice and look for a new GP. I have sadly been considering going private, which is something I never thought I'd do, but if that's the way NHS docs treat this then I don't know what else we're meant to do! It feels like a hell of a lot of effort to advocate for yourself as a patient when you're knackered doesn't it?!
Your GP practice, who are all private businesses these days, get extra points for prescribing AD's. It called the quality and outcomes framework. The points allocated are then turned into cash for the practice.
So AD's statins, diabetes meds, blood pressure meds are all big earners. I'm afraid thyroid isnt. A more cynical person than me might wonder at this 😁. There's a reason why prescriptions for AD's have gone through the roof in recent years.
I was also prescribed anti depressants initially (for anxiety) but didn't start them as I knew it was thyroid related. If you do decide to pay privately, you don't necessarily need an endo, especially if you are doing lots of research yourself and use this forum for advice. For me I'm just done with the battle, exhausted and overwhelmed with how bad things have got and I can't fight them any more. Everything takes SO long, appointments for tests, appointments to talk to them about the results, hoops to jump through etc. The last 3 years of my life feel like a complete waste and I'm determined not to waste any more time (it's hard enough being patient with each dose increase).
Why are we left with those arrogant idiots who are basically a danger to our health....makes me see red!
Raised antibodies are usually a good enough indicator of Hashi's. Treatment is as for hypothyroidism but medication may need to be altered during a (Hashi swing
We are advised to follow a gluten free diet for Hashi's in simple terms it helps reduce inflammation caused buy antibodies
Starting dose is generally 50mcg T4, not 25mcg, if the dose is too low you will experience symptoms which will remain until you reach your therapeutic dose....
When hypothyroid symptoms are a message that you need more hormone!
You are undermedicated....this idiot should know this
Science shows that TSH is not a reliable marker....FT3 is the most important reading followed by FT4....but few of them understand this.....hence the mess so many of us find ourselves in
When correctly medicated TSH should be 1 or under.....not 4.
My younger son is now in the situation where his GP doesn't understand thyroid hormones...or TSH, which is a pituitary hormone. I understand your frustration....and I've already travelled the rocky road!
You can do a blood test with people like monitor my health forcabout £30;with tuk discount. This gives T4 levels and T3 levels.If they are low it adds to the arguement.
essential to test vitamin D, folate, ferritin and B12
Likely low as you have Hashimoto’s
Standard STARTER dose levothyroxine is 50mcg unless over 65 years old
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
unfortunately the NHS is quite good at knocking patient concerns or even their own thoughts down. Well patient we thought it might be X, we’ve tested for X and it’s not X, good bye. At the beginning of the year I was feeling absolutely awful with under medicated hypothyroidism and my GP wouldn’t accept I needed an increase in levothyroxine and dismissed my symptoms as being caused by hypothyroidism. On the third visit in January she continued this dismissal until I said so what do you think is causing my symptoms Doctor, to which she said I don’t really know. I replied with you don’t know and I think I’m under medicated, so we either try an increase to my dose or you refer me to someone who can find out what is causing my symptoms. I’m feeling much better on my increased dose.
If they deny it’s your thyroid causing issues, ask them to investigate what is causing your problems.
Just read your post - 100% ditch that GP - you don't need the stress... it is worth spending some money on thyroid specific blood tests as your description sounds like hashis , and blood tests will confirm that . Do make sure your other nutrient levels are good, too - see Slow Dragon's post... it makes such a difference... Good luck.
it’s criminal the way you are being treated or rather not treated by that Dr. When you have a TSH above 2.5 you will start to feel the symptoms of a thyroid condition. Yours is definitely Hashimoto’s. The best place to aim your TSH at is between 1.00 - 2.00. Never over 2.5. To achieve that you need enough T4 and T3. I would check your TSH, T4 and importantly T3 results privately if you can. Monitor My Health is an on line service that can do this for you cheaply and effectively. The NHS probably won’t check T3. I was left by my gp for 4 years when I’d been completely ignored about my situation. He just kept saying I had depression and wouldn’t even check my thyroid levels. Eventually he did and my TSH was 36!!! I was in a very bad way by then. So don’t let this rumble on as it won’t go away. 25mcg levo he has prescribed to you is far too low a dose. If I was you I’d change your gp and have a polite word with your gp practice manager about your lack of help. Please don’t ignore and ensure you get help by politely pressing your Gp surgery. You could always try the private route which I did and was my saviour as I need T3 as well as T4 medications. NHS are very poor at taking care of thyroid patients. They just don’t understand how debilitating it is if not treated correctly.
Thank you all so much for your kind and informative replies 💞 I had no idea that T4 and T3 are so important. I actually had some tests through Medichecks last year and my T4 was 11.8 I think? Not sure about T3, but I think it was relatively low.
I'm definitely going to look into vitamins and diet (thank you SlowDragon for all of those helpful resources!).
I've just found out from a neighbour that the doctor I spoke to is leaving the surgery on the 12th!!! Apparently a few people have complained about him. There is a well-regarded female doctor, so I'm going to request an appointment with her next week if I can work up the courage to face them again! The whole experience has really put me off contacting them.
Don't trust doctors who have no idea what they are talking about, my gp did the same for 18 months, he treated me so horribly was rude and in my last appointment with him he told me he had other patients ,and I was to go away as I was menopausal 😡 skip to 3wks later..I collapsed at home were taken to the surgery where I saw a completely different gp, who immediately told me I had an overactive thyroid, and yes I did ...the blood tests she did proved it, but I lost my thyroid because I became thyrotoxicosis....that gp I had for those 18 months should have gone back to medical school 😡😡 push for a second opinion 👍
That gp should have been struck off. He’s probably treating many other patients in the same appalling way. Once my gp got tetchy with me saying he had another 40 patients to deal with and wouldn’t help me. I reported him. He’s now left my surgery.
Actually this gp has now thankfully retired 👍But to my horror last year I noticed him in my new surgery 😮[ when he retired we were moved into another surgery, never given any option to pick another surgery 😡 it was.. your all going in here and that's it] and they are just as bad as my old one😡 but when I saw my old gp swaning around reception I immediately asked what he was doing there as he'd retired, I was told he was filling in , in no uncertain terms told the receptionist I never want an appointment with him, got that look off her of ....how can you be so cruel...if she knew my story she'd soon change her mind I'm sure😡
Elevated TPO support the diagnosis of Hashimoto's. Once you have TPO antibodies, they generally persist in your body long-term. Elevated TPO antibodies can signal increased inflammation. If you have an ultrasound, it can show characteristic changes in the thyroid gland. Clinical symptoms you also are feeling should be included in diagnosing a Hashimoto. Sounds like this doctor does not know a whole lot about this disease. I would seriously think about seeing somebody else. Even if a doctor doesn't agree with you, they should not be arrogant and condescending. You are not stupid. You are smart to recognize that there is something wrong with you. Hope you get some resolve to the situation soon. There's nothing more frustrating when no one wants to listen to you regarding your health. You yourself know your own body and know when something's wrong.
I'm so very sorry that you have had to go through this (sadly very common) experience. In most western countries treatment is started when the TSH is around 3.5. The UK's starting point is, I understand, uniquely high, and it also varies from area to area and from lab to lab. Many GP's, and consultants, lack knowledge with regard to thyroid disease and the NICE guidelines which they follow are not helpful to patients. Reliance on a single blood test - a relatively recent development - means that doctors are no longer able/required to do a clinical diagnosis that takes into account symptoms, appearance and family history, for example. ie listening to and observing the patient.
So, no, you're neither mad nor stupid. Your instincts are probably bang-on. Your choices are: get another more knowledgeable GP and consultant; consider going private if that's possible and, crucially, keep taking advantage of the wealth of info and expertise on this site. I know it's hard when you're ill, but arm yourself with as much data as you can manage, and do NOT allow doctors to overwhelm, belittle or de-value you.
I've heard that the NHS sets 10 mIU/L as the minimum level for treatment for hypothyroidism; I really hope that isn't true. I think your 6.21 TSH is high enough to make you feel acutely ill. When I was diagnosed with hypothyroidism, I had a TSH of 6.08 mIU/L and was too sick to work. My stepson once had a TSH of 7; when he came to visit, he immediately collapsed in a chair and mentioned that he was getting a lot of pressure from his employer. I have lost my patience with doctors who don't seem to recognize that about 1.0 mIU/L is normal and that TSH levels in the healthy population are pretty tightly clustered around that.
So it's really that bad! I don't know where the 10 comes from. But it seems to be a nice round number that they decided to go with maybe 50 years ago when TSH assays were more primitive, and when they set the budgets. I'm glad to live in the US, where there is some flexibility, though it varies a great deal among medical centers. We still have problems with some labs getting strange numbers.
it seems to be a nice round number that they decided to go with maybe 50 years ago when TSH assays were more primitive, and when they set the budgets.
It was actually more recent than that - it was more like 8 - 10 years ago. I was diagnosed with subclinical hypothyroidism with a TSH of just under 6 in 2013. It turns out that the diagnosis was most likely wrong - I think I have secondary hypothyroidism. But I have heard of plenty of people who were diagnosed with primary hypothyroidism after I got my thyroid diagnosis, and many of them were forced to wait until their TSH was 10 or very close to it.
I've often wondered where the level of 10 came from too.
Gaslighting is one of the numerous tactics quite a few doctors use to keep patients in line. And whatever phycological warfare is employed, it usual leaves the patient, at least temporarily, incapacitated (which is the goal). It is normal to feel anxious or angry or dumb or confused or whatever unpleasant reaction creeps up and one has to go through it at the time. However, then it is time to remember that the doctor is there to serve the patient, not the other way around. If that is not the case, then an alternative has to be found. If you are fortunate enough to have your choice of doctors, find the one that works for you (dual meaning). If that is not possible, try to gather as much reliable information as possible to help yourself as best you can. The latter, of course, is super tricky, because if you do need medication, you need somebody who will prescribe it. One thing is for sure, if you have a doctor who consistently has you leave the office with any kind of bad feeling, either stay away or, if that is not possible, take somebody with you, who is not a patient of that doctor and speaks up for you and "protects" you. I have found that even the presence of another person in the examination room can prompt a doctor to be less "abusive", because they now have to keep an eye on two people. Either way, if you leave a doctor's office in any other state than that of reassurance that is on the doctor and not on you!
My story: Had Hashi for 15 (minimum) years before diagnosis. Diagnosing doctor found symptoms not matching bloodwork but persisted in getting to the bottom of things. Ultrasound confirmed destruction of thyroid. Doctor treated by symptoms not bloodwork. Best doctor I ever had. Never had one like him ever again. So, yes, ultrasound might be helpful for you, but only if matched with an equally helpful doctor. You definitely deserve better than what you described. I hope you will find it. Best of luck.
You mention having a PET scan “before cancer treatment” that showed “diffuse activity” in the thyroid. That could have been because of inflammation (any inflammation will cause uptake on a PET scan) related to Hashimoto’s. But having any cancer is a potential risk for thyroid cancer so an ultrasound is warranted. You definitely need a doctor who actually practices medicine.
My TSH was 4.7 and the doc refused to treat until I also demanded a T4 test which the lab 'refused' to do (or 'lost' the results for twice) but I persisted and eventually the combined results gave my doc the information she needed to diagnose thyroid disease. Was titrated up on levo for several years until Medichecks blood tests revealed that I was not a good converter and lobbied for combined therapy for T3 also which has been incredible. The fight to do all this and the personal cost to myself and my family of being untreated to that point is immeasurable.
Agree with everyone here, bin that particular doctor. You ARE being gaslighted and at a time when you are utterly vulnerable and exhausted too. It's an absolute disgrace that you are being treated this way. Like so very many people/women (and it's mostly women I understand, apologies to any guys on here who are upset by that remark but statistically it's true) your medical needs are being ignored.
This is systematic abuse based on cost of treatment. I hope the new Govt does something to address it. They want/need us all working till 67 or older so they damn well need to shape up and start understanding thyroid problems. Just like they have menopause ones.
Use the combined energy of the good folks on here and don't think you are going mad. You need support at a horrible time. I hope you manage to push on through. Good luck with it all x
Thank you so much💙Can I just ask you (or anyone else!) how you know you're not a good converter of T3? I haven't quite got to grips with the T3/T4 thing yet.
As I understand it, it's a balance thing on your blood tests. (High T4 but low T3 on just levo I think.) Post all yours on here and ask those who are an absolute whizz at the science to read them for you. There are also some genes that predispose one to being a poor converter I believe. But be prepared for a long haul in finding this out. Took me two years.
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At a dead end with GP, where to go from here?
Advice
Hashimotos or not 
