Hi, a year ago I started getting trouble swallowing and my clothing feeling very tight around my neck so I asked to see a gp about this. They refused to check the lump so my dentist very kindly referred me to the hospital and they did an ultrasound and found a nodule on my thyroid. They still didnt feel my thyroid results were bad enough. Very low but they said ok. Now I know I have a thyroid problem it is clear its progressively been getting worse for years. Related migraines all down the side on which the nodule is for years. In my head, ear, side of face, collar bone to shoulder blade. Everytime I have a "flare" I have the migraine until it calms down. The nodule has grown considerably and I do have out of range peroxidase antibodies. Very low tsh and t4. The endo discharged back last September and the gp refuses to acknowledge my growing nodule and raised antibodies.
I'm getting quite desperate with the growth of it in a short time that nothing more serious is going on. I would like to see a private endo that deals with hashimotos incase it is that. Any recommendations would be really appreciated. It's starting to worry me the growing nodule.
Preferably an endo in norwich, norfolk or suffolk area please
My latest results 19th Feb 2021
Free T4 10.5 pmol/L (7.5-21.1)
TSH 0.22mul/L (0.35-3.5)
Peroxidase antibodies 34.7 kul/L (0.0-34.0)
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kaju20
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Great thankyou. No, I'm not on any meds as I was told there are too many "politics" tied up in thyroid medication and that I would need to be 25% under the range they go by to be considered for medication, I'm just concerned by that point my thyroid might already be destroyed if it is hashi
I think so. Unfortunately things are much slower these days, cant be helped. But the nodule is concerning and maybe I shouldn't wait if its grown so much in a year.
Who told you that you would need to be 25% under the range to be considered for medication. It’s a worrying attitude.
The existing range means many within range but low still feel symptomatic. What is the purpose of a range if they say this?
If you have raised TPO then by definition you have autoimmune and your thyroid will continue to decline. Do they have to be 25% above range to be considered positive?
Your TSH seems to be going lower & below range. FT3 should have been tested also. Perhaps getting TSH, FT4 & FT3 tested privately might help determine what going on. This alone should be investigated as with a lowering TSH you would expect raising FT4 & FT3.
I know NNUH (local hospital) recently adopted a policy to refuse all GP referred neck lumps.
I was previously referred 2x without issue and had a FNA on a thyroid nodule during 1st scan. (Which was clear). It grew noticeably and I was rescanned but the FNA was not repeated. The thyroid function blood test wasn’t processed in my case and I was hyper. 7 month between scans.
Recently I had a new neck lump (separate to thyroid) and had to have an extra consultation via ENT to be allowed a scan.
I would obtain a copy of the report of the scan you had. Obtain either via the hospital or it may be in your GP records (a letter should have been sent to them). It should have comments about your thyroid health and size & nature of nodule. Usually if there is anything remotely concerning they they will arrange a FNA.
I would repeat to your GP how this is affecting your swallowing, voice and breathing and causing pain in collar bone and jaw area. Ask your GP If constriction from the swelling could be causing your migraines, especially as they are the same side. They probably either won’t know or will say not related. Ask if ENT can see you.
Thankyou for the advice. This is what I dont understand with the ranges. I keep being told they're very generous ranges and that you would have to be very much out for there to be a problem. It was one gp at my surgery that told me 25% out of range was what they looked for. They ignore everytime I mention the growing nodule.
I will try and get a copy of my first scan. Hopefully it will have details of how big the nodule was. I think my only option will be to go private because I just cant get any referral from my gp. They keep repeating my test results are fine. Even when I did get to see an endo a year ago, with elevated IGF1 (as they were looking for evidence of pituitary tumor) he discharged me, even saying my antibodies were great (they were a little lower a year ago 32.0 range being from 0-34) so I suppose if the endo says everything is good the gp isnt going to do anything.
I mentioned the nodule to another gp and he said but your results are within range so no concern.
I'm just worried I'll pay a private endo and he'll say the same thing. No investigation
In some countries you will be given treatment for a TSH above 3. In the UK the range is higher and is left to reach 10 until treatment is offered.
Most feel best when TSH is around 1 and FT4 & FT3 top third of range. This doesn’t mean everyone has to be this level to feel well but many do not feel well when low in range, which would suggest the existing range is too wide.
Antibodies should not be referred to as “great“ they are either negative or at a positive level. Levels fluctuate so once you have 1 positive level it confirms autoimmune, even if they later drop to an in range level.
With low TSH & Low FT4 & FT3 central hypothyroidism resulting from a pituitary issue is a possibility. What investigation were done for pituitary?
If you do consult a private endocrinologist make sure you have a current full thyroid function with nutrients and antibodies before attending. I’ve no experience with private route so can’t advise.
They dont routinely test for T3 do they? Which nutrients should I be tested for? I will try ask my gp for a full panel, I have a feeling he'll be very reluctant or just say no need. They refused a vitamin D test in the past saying it's not necessary. I am.suspecting it's a pituitary issue. Years back when I was having the migraines really bad i managed to get a scan and they found a small cyst on my pituitary, which I told this to the endo in saw and he put me through for relevant tests and said there was no concern. But he also told me that he was the guy who cuts when they say cut. When I saw him face to face he said he didnt know anything about pituitary so I imagine he was purely going by range numbers. I've just been very unfortunate around this area I live it seems.
If I go through the NHS I'm worried I'll be waiting months by which time, a year has already passed and if it is more serious well that's not good.
I dont suppose you know if theres any connection vascular wise? I have broken capillaries all over my chest, shoulders, inside of knees, they're getting quite bad. On my cheeks too, I thought it was rosacea but on other parts of my body maybe not. I just wondered if that's connected?
No they dont routinely test for FT3. Often TSH is tested then FT4 & FT3 only if out of range. This is why condition like central hypothyroidism get missed and doctors even specialist know very little about about it.
For thyroid function you need. TSH, FT4, FT3, TPO, TGAb, Ferritin, folate, vit D & B12.
The medicheck blood test you had previously is a good choice.
If GP will do other nutrients but not vitamin D use monitor my health vitamin D test
Again, try and obtain a report of the investigations for the pituitary. Search the hospital website for records library. I trusted on two occasions my results were checked correctly, but I since learned I was clinically hyper years before being diagnosed.
Unfortunately the specialist only look at “their” fragment & that surgeon would know nothing about pituitary. It’s the same with skin symptoms.
Are your broken capillaries tiny dots (Cherry angioma / petechiae) or spider veins?
I have hundreds of cherry angioma (GP diagnosed) most on upper arms, now on chest, legs & even on my scalp line and eye lash line which is not a typical place for them. GP said no point referring me as too many and too small to treat.
Both angioma and spiders veins can be associated with diabetes, I’m type 2. Has you HBA1c been tested?
I have both but mostly spider veins. My gp mentioned that I was referred to diabetes by the endo back in september but on my records on the NHS app there doesnt appear to be a referral. Maybe I will make a list and request to be tested for that also. Alot of the private endos seem to have diabetes in their credentials. I didnt realise they were linked like that. That's interesting
Most endocrinologist are diabetes specialist. I think they are prevailed upon to help in the thyroid clinic. I wonder why a referral was made? (Or not made, it seems), It was my endo who asked why I wasn’t controlling my blood sugar very well.... When I looked confused he asked when was I diagnosed? I hadn’t been so he said see my GP about it. He certainly didn’t refer me within his own department.
That's what I was wondering myself because I had a look through what he asked to be tested when he was looking for the pituitary tumour and I couldn't find HBA1c in the list. I do actually have a copy of that, just not the nodule scan results.
He tested cortisol, estradiol, IGF1, prolactin, liver function , urea and electrolytes and tsh, free tyrosine.
I dont remember telling him any symptoms that would make him suspect diabetes... it was a while ago.
I just had a read of type 2 diabetes and I do have an awful lot of those symptoms. Especially the thirst and dry mouth. I have had candida since I was born apparently. So it might be a good idea i get tested. Thankyou so much for mentioning
If you are having type 2 symptoms definitely arrange a HBA1C. As my thyroid levels went down my blood glucose went up, so did my cholesterol.
You previously mention you eat quite well, but having a high amount of fruit smoothies, even the non processed ones are high in natural sugars and many find their HbA1c spikes considerably which high consumption of fruit, especially smoothies.
Well, that endo had told me he understood nothing about the pituitary so I suppose if that was the only thing off he saw no concern.
I will maybe call the department and ask if I could see them again maybe as things have got worse. I highly doubt my gp will refer me.
I will ask for the diabetes test. Worth ruling that out.
In the past I have done the Patrick Holford diet. The GL diet. So I've always been conscious about which foods are higher carb. But a few months back i had gallbladder issues and i couldnt eat fat at all for a while so i was left with carb options... so it is true I need to watch my starches and fruit sugars again. I will get out PH GL cookbook and start measuring properly my carbs and starches so as not to spike my blood sugar.
Thanks for the reminders.. it's been at the back of my mind, time to put it into practice!
i can’t help with private endo but as someone said above i imagine the most cost effective way to start the process is to get private testing done ( thriva, medichecks etc offer thyroid with ft3 & antibodies, inflammation, iron, b12, folate, vitamin D and liver tests all in approx £85). when i’ve seen a private endo in past i’ve been disappointed but my situation was very different to yours- your tsh is low but you have an obvious goiter, it’s clear you need the private tests and maybe a private scan of the thyroid, then look for an endo who suits your needs ( the thyroid uk list is a good place to start). you could see anyone really regardless of location as most doing it over video call.one thing i’ve learnt after years of seeing private and nhs endo’s is most of them disregard hashimotos. they see it as something that can’t be cured or overcome so simply irrelevant, and focus on ft4 and tsh ( ft3 if the patient is lucky). so i guess a good starting place would be to spend your money on private tests and a scan, therefore hopefully avoiding you having to pay for private practitioner to test you.
keep reading and researching, good luck you aren’t alone!
That's what I'm nervous about. Finding the right endo. I keep reading they dont necessarily have the answers. Seems what you need is a hashimoto specialist which aren't easily found. I was thinking of having the medichecks blood test again and I'll look into a private scan on the goiter. Thanks so much for the advice and info, really appreciated
I will just add that most good Endos won’t see you over video call, especially the first appt when they need to do a thorough inspection of your body and feel around different things especially your neck.
Follow ups are fine on video call.
Can you get to Oxford, there’s a good doctor there that gets a lot of good reviews on here. He’s a Professor.
I'd actually prefer to see them face to face at least to start. If they have a good reputation for pituitary and hashimotos I have no problem travelling. Thankyou so much, any recommendations welcome
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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
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 .
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 thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
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