Hyperthyroid help: My GP has made it clear he is... - Thyroid UK

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Hyperthyroid help

Bjorkish profile image
37 Replies

My GP has made it clear he is not interested in looking into my symptoms, and last time I took private tests he literally turned his head away and said he wouldn’t look. That was 2 years ago and they were nothing like this, just TPO in the hundreds. Will this result be enough to convince him to take me seriously, and what questions should I ask? Also any advice on how to deal with the hideous symptoms while I wait for an appointment? Chest pain, palpitations, no breath, panic attacks, tremor, heat intolerance, insomnia and upset stomach are the most prominent. Last night I slept for half an hour.

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Bjorkish
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37 Replies
Lalatoot profile image
Lalatoot

You must feel awful. Hopefully it will but he may insist on doing his own tests.

SeasideSusie profile image
SeasideSusieRemembering

Bjorkish

You are not hyperthyroid, that is a Hashi's hyper swing (your profile shows that you know you have Hashi's).

Do you take Levo or other thyroid meds? If so then it's usual to adjust dose during these swings so maybe reduce your dose and see how it goes.

Don't let your GP reduce your prescription dose because you will swing to Hypo and will need to go back to your original dose eventually.

Bjorkish profile image
Bjorkish in reply toSeasideSusie

Not been taking anything. I had raised TPO, low 100s, a few years back but my GP wouldn’t help. Started feeling horrendous about 6 months ago so saved up for these tests. I have had M.E for 10 years and am 80% bedridden.

SeasideSusie profile image
SeasideSusieRemembering in reply toBjorkish

Bjorkish

What happened about the Nutri Thyroid you were on, or the Metavive your private GP suggested?

Bjorkish profile image
Bjorkish in reply toSeasideSusie

I have been taking nutri thyroid all along, and also low dose Naltrexone. One of my kids needs private treatment for something and as a single parent in disability benefits that takes all our spare money so I couldn’t afford Metavive. Also I got extremely depressed and gave up on life for a while.

SeasideSusie profile image
SeasideSusieRemembering in reply toBjorkish

Bjorkish

Not been taking anything.

I have been taking nutri thyroid all along,

Well, that's confusing!

If you are taking Nutri Thyroid then how much do you take? You probably should stop taking it with those results until they come right down into range.

Bjorkish profile image
Bjorkish in reply toSeasideSusie

Yeah I can see that, sorry! I was taking one Nutri thyroid three times a day. I stopped about 6 weeks ago when I ran out and couldn’t afford any more.

SeasideSusie profile image
SeasideSusieRemembering in reply toBjorkish

So any benefit from the Metavive would very likely be out of your system after six weeks, so your current results definitely show a Hashi's hyper swing.

Bjorkish profile image
Bjorkish in reply toSeasideSusie

I haven’t been taking Metavive at all, just Nutri Thyroid. Couldn’t afford Metavive.

SeasideSusie profile image
SeasideSusieRemembering in reply toBjorkish

Yes, sorry, typo. I meant NutriThyroid.

United77 profile image
United77 in reply toBjorkish

I’ve just finished reading Paul Robinson’s book , recovering with T3 , and ‘ the thyroid patients manual’ interesting modern thought s but one of his findings showed that thyroid patients have high incidence of ME , I had it myself , recovery requires you to get your nutrition in order as well as thyroid treatment , he advocates concentrating on improving symptoms rather than having perfect blood readings and believes the ranges they work with are often unrealistic given they are established from ‘healthy’ non thyroid patients

Bjorkish profile image
Bjorkish in reply toUnited77

Thanks, this is interesting.

Bjorkish profile image
Bjorkish in reply toUnited77

Do you feel you no longer have M.E, and do you th8nk it was your thyroid all along that gave M.E symptoms?

greygoose profile image
greygoose

Your doctor is being very childish. Take him a lollypop next time, see if that persuades him! Totally unprofessional!

Hofb profile image
Hofb in reply togreygoose

Get a new doctor. I wouldn't tolerate his actions. He obviously has doctor syndrome. I go to a GP and he will do whatever tests I ask, in addition to regular testing. You need someone who cares. Hope you get feeling better!

SlowDragon profile image
SlowDragonAdministrator

These results show you have Hashimoto’s

Absolutely essential to regularly test vitamin D, folate, ferritin and B12

Have you had these done?

What vitamin supplements are you currently taking?

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

drknews.com/changing-your-d...

Read up as much as possible about Hashimoto’s

Add vitamin results and ranges if you have them

Come back with new post once you get vitamin results

Bjorkish profile image
Bjorkish in reply toSlowDragon

Thank you for such a comprehensive reply! I had B12, ferritin and Vit D tested in the same batch as these tests and all are within the range used by Medichecks.

SlowDragon profile image
SlowDragonAdministrator in reply toBjorkish

Please add actual results and ranges on these

Within range is not same as optimal

Bjorkish profile image
Bjorkish in reply toSlowDragon

I can’t work out how to add more photos. ☹️

helvella profile image
helvellaAdministrator in reply toBjorkish

You cannot add more than one image to a thread. And that must be on the originating post at the start.

Type them in! :-)

Bjorkish profile image
Bjorkish in reply tohelvella

Yeah, Sorry, my brain isn’t working, I’m now averaging about 45 minutes sleep a night.

FERRITIN 54.2 ug/l (range 13-150)

FOLATE (serum) 14.96 ug/l. (R >3.89)

Vit B12 (active) >150 pmol/l (R >37.5)

Vit D 118 no longer/l (R 50-175)

jimh111 profile image
jimh111

I would send a copy of the results to him and ask for a quick appointment, make it clear you are not taking anything. Your hormone levels are certainly well in the hyperthyroid range, whether it is a consequence of the high TPO (probably) or hyperthyroidism caused by TRAb doesn't matter in the short term you need medication to protect your heart and sort out these high hormone levels.

eachpeach profile image
eachpeach in reply tojimh111

Agree. You need a specific Graves' thyroid antibody test to see if it is hyperthyroidism. My levels were similar to yours. I started as having Hashi's but then it turned into Graves'. If you have chest pain I'd ring 111 or go to A&E straight away as some hyper symptoms can be serious. You need some kind of treatment for those symptoms asap. Please on't leave it, chest pain needs urgent treatment.

Wetsuiter profile image
Wetsuiter

and i wouldnt stay with that Dr if i could avoid it

Bjorkish profile image
Bjorkish in reply toWetsuiter

Rural practice.

HRH8591 profile image
HRH8591

Always, always put these things in writing. Your GP is accountable for his decisions or lack of them. That which is in writing must be placed on your medical record (and I would make sure that it is via a check) and hold him to account. Personally, if my GP had acted in this way, I'd have found another. I had similar issues and was hypothyroid with antibodies but writing makes a very big difference in all things. Write, send it recorded and then check it is on your record. You may find there is a very different attitude once you do but seriously do you want someone like this looking after your health? Arrange access to your records and check everything that goes on there if you are able. I did this as I had arranged online access. Really not good enough and if he doesn't respon positively go to another GP at the practice. I did this and suddenly the original one changed his mind on many things.

Bjorkish profile image
Bjorkish in reply toHRH8591

Thanks! I have been through all the doctors at the practice and I live in a tiny rural town so not much opportunity for changing. I will get access to my records though. Once you have a diagnoses of M.E nobody is interested as they think you are a hysterical malingerer.

HRH8591 profile image
HRH8591 in reply toBjorkish

I think that generally applies if you are a woman whatever may be wrong with you. Need more competent woman GP's.

Poppy_the_cat profile image
Poppy_the_cat

I am horrified; at your arrogant GP and the condition you have been reduced to. This is negligence. I am furious.

One thing I will say, paraphrased quote from my own wonderful GP... Women get treated very differently to men. And these are the BMA's own findings... They have found that if a man complained of feeling unwell, for example with chest pains, he's rushed in to hospital and seen to immediately. If a woman complains of the exact same symptoms, she is seen as over reacting and told to go home and rest!!!!!!!

My GP said these were the BMA's own findings!!!

A well worded, conclusive letter with your own blood tests that you saved up for yourself to have taken..if you have a smartphone, you can dictate. There's a little 'microphone' icon, it should be across the top of your keyboard, looking a little like a 'bullrush'. Tap it and speak clearly. When you stop speaking it will go to sleep. Just reactivate it by tapping it to come to life again when you are ready to proceed.

You can alter punctuation after speaking.

Do your letter in an email.

You can add yourself to the recipients, that way you will automatically get a copy which of course will have the date on it. It will be your document copy.

You can also print it off as a letter if you choose.

If you add, say 'Letter to GP with blood test results in the 'title box' anytime you want to search for this letter, go to the 'SEARCH' box and just put say, 'GP letter blood'....and your email will pull up every email with those words... helping you to find it in the future should you need to.

If you are feeling so terribly unwell, virtually unable to type, I thought this would help you.

I wish you all the best.

There are some brilliant people here who can help support you and teach you...

Don't give up.

Get a new GP regardless, as a person with this attitude will never be of help.

Keep us updated with your improvements. The nutritional/vitamin advice and gluten avoidance is SPOT ON.

You can do all of this and take back some control for yourself.

Best of luck.

Poppy the 🐈

Bjorkish profile image
Bjorkish in reply toPoppy_the_cat

Thank you, such a thoughtful reply. I live in a very small rural town, and I’ve been through all the GPS in the practice. The only good one left 2 years ago. Plus is you have M.E they just assume you’re a lying malingerer. I will definitely take your advice and put everything in writing before I proceed. So hard when I can’t absorb or retain information!

SlowDragon profile image
SlowDragonAdministrator in reply toBjorkish

Email Dionne at thyroid uk for list of recommend thyroid specialist endocrinologists

You are going to have to go over GP’s head ....private consultation if GP refuses to refer you

thyroiduk.org/contact-us/

Batty1 profile image
Batty1

Get another Doctor....awful treatment.

Bjorkish profile image
Bjorkish in reply toBatty1

Sadly not possible. Very small rural town.

Buzcat profile image
Buzcat

My GP was the same took my private blood tests to him didn’t even look at them pharmacy changed my mercury pharma Levothyroxine to Teva brand ended up taking heart attack the doctors know what’s going on it’s the government to blame that’s what my doctor said so I would go back to your GP and demand tests and if he doesn’t send you for them tell him you want it in writing he is refusing you

Bjorkish profile image
Bjorkish in reply toBuzcat

So sorry to hear this. X

Hi bjorkish

Sorry to hear you're so unwell and that your GP doesn't even look at your numbers or your symptoms. (!!!!!)

I was diagnosed Hypo last May on these numbers,

TSH 4.27 (0.22-4.20)

FT4 12.7. (12-22)

FT3. 5.18. (3.1-6.8)

TGO. 113. (<115)

TPO. 9. (<34)

I saw a great private endo, who diagnosed Hypo and started me on 50 Levo

Your results definitely point at Hyper, as your TSH is rock bottom and your FT3 and FT4 are way over the range.

Plus your TGO and TPO are very high.

Please PM me if interested for the endo's details (London)

All the best!

Alps

Bjorkish profile image
Bjorkish in reply to

Thankyou!

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