Didn't get anywhere at endo appointment with TS... - Thyroid UK

Thyroid UK

129,711 members152,566 posts

Didn't get anywhere at endo appointment with TSH 5.8 and elevated TG antibodies. Is it worth getting another opinion?

jkyhnm884 profile image
58 Replies

Hi guys,

Male, UK in my 30s here. Have lots of typical thyroid symptoms, tiredness, aches, not the best stomach health, elevated cholesterol etc etc. My TSH is 5.8, it's always between 5 and 6 so not a one off. t3 is 5.5 ref range 3.1-6.1 so that looks decent at least. t4 15.7 ref range 12-22. TPO Antibodies 18 Kiu/l ref range 0-34. TG antibodies 133 Kiu/l ref range 0-115. So the TSH seems a bit of a problem, TG antibodies always elevated though it seems TPO is more valued for hashimotos so I dont know. Saw an endo the other day who said these results were "absolutely not" a thyroid problem because t3 is normal. Is that definitely true? Lots of thyroid posts I see suggest otherwise but I dont know. All other bloods, testosterone etc are ok though that's on the lower end of ok. Do people think I should see someone else? Or would an ultrasound possibly help? I don't even mind the cost really, just want to get better but I see people say the UK won't care if TSH isn't above 10 so confused at what to do next. Thanks so much for any advice!

58 Replies
Knackeredandcross profile image
Knackeredandcross

it’s my understanding that according to The NICE guidelines which GP’s follow; if your tsh is above range but under 10 on at least two separate tests, and youre symptomatic then ou can trial levothyroxine. An optimal TSH is below 2 at the most and your t4 is lower than optimal too. If you have antibodies also (which means you have hashimotos) then there’s an increased chance of developing full hypothyroidism so definitely worth trialling Levo. I’m sure some of the more experienced people on here will help. My own tsh was at 4.89 and I have hashimotos so I’ve just started levothyroxine as I had horrendous fatigue. I can feel an improvement already. Best of luck!

jkyhnm884 profile image
jkyhnm884 in reply to Knackeredandcross

Hiya, thank you for the reply, didn't know that, very interesting! Might take that back on a print out and wave it in his face haha. Super happy to hear you are feeling better, that's awesome, hopefully I can tell a similar story soon too!

Knackeredandcross profile image
Knackeredandcross in reply to jkyhnm884

nice.org.uk/guidance/ng145/...

jkyhnm884 profile image
jkyhnm884 in reply to Knackeredandcross

Thanks mate!

birkie profile image
birkie in reply to Knackeredandcross

HiWhat I can tell you about levels is the GPS and endos focus way to much on them, I myself saw an endo in 2014 after suffering with hyper symptoms, my TSH was suppressed and according to the endo I had an episode of thyroiditis but my T3 was in normal range, she ended the report with: this could be subclinical HYPERthyroidism I recommend she has regular thyroid blood tests because of her thyroiditis episode.

I'm afraid I never saw this report until I requested my medical records in 2020 and my gp never did any follow up thyroid bloods ( can't find any in my records) so I continued to suffer with my gp now telling me it was my menupausal state, this carried with me having frequent visits to my surgery with no help, me becoming very ill until sep 2018 when I collapsed, got an emergency appointment at my surgery saw a new gp and she diagnosed me on the spot, bloods confirmed this the next day.. Hyperthyroidism I then went into thyroid storm, was in hospital for 15 days then had full thyroidectomy.

I had graves which is auto immune, the lovely doctor in the hospital said I'd probably been attacking my own thyroid for years in affect killing it slowly causing me to have the symptoms, I always wonder if my gp had been on the ball would I have even lost my thyroid?? So it's not all about the levels, it can also be about how you are feeling to.. Personally I'd get a second opinion good luck 🍀

jkyhnm884 profile image
jkyhnm884 in reply to birkie

Hiya. Thanks so much! Hope things are getting much better for you now, sorry you had to go through all that and that's what I fear really, I feel crap now but still function just about but know it can get much, much worse over the years so would rather get treatment now and potentially save myself years of awfulness!

birkie profile image
birkie in reply to jkyhnm884

Hi

Yep if only I had another way out!! I pushed my gp as much as I could, I put my symptoms into the nhs search engine it always came out as over active thyroid, I mentioned this to my gp in 2017 and got backlash, if only he'd looked back in my records and saw the report the endo did in 2014😠

This is why I take everything with a big pinch of salt when a gp tells my anything, unfortunately it's not over for me my pth/calcium went over range in 2020 (hyperparathiyroidism /normocalcemic) and again my endo gp have brushed me aside, but I saw a private parathyroid surgeon on the 18th November he did an ultrasound scan of my neck and found a 7mm nodule to the left side but it looks like it's on a nerve causing me pain😢

I now need a pet chlorine scan to confirm what it is, as it could be an enlarged para gland a piece of thyroid left behind or an enlarge lymph node, but it just shows you how bad the nhs are at the moment, they really don't want to deal with you unless your dying of something, no wonder people are not getting the diagnosis they need 😠

jkyhnm884 profile image
jkyhnm884 in reply to birkie

Damn, that sounds a nightmare. Best wishes in dealing with it all and hope you get some answers and treatment soon!

aptucxet profile image
aptucxet in reply to Knackeredandcross

Knack........can you tell me how long you've been on levo..........and what the dosage is? i started on levo about 3 months ago at 25 mcgs........then upped to 50 mcgs about 1 month ago........which doesn't seem to be helping me yet...........although my TSH is down to about 1. now. I do have hashimotos, also. thank you

tattybogle profile image
tattybogle

fT3 is the last thing to drop in hypothyroidism ., it is often pretty good early on in hypothyroidism.... so Endo is incorrect on that one.

When a thyroid is failing ....first the fT4 wil be a bit lower than 'whatever your usual is' ..then the TSH will go up to encourage thyroid to produce more T4 .. this higher TSH also has the effect of increasing production of T3 from the thyroid AND conversion of T4 to T3 in the body.

So early stage thyroid failure usually looks like "moderate fT4 level / slightly raised TSH / and slightly better than expected fT3.

jkyhnm884 profile image
jkyhnm884 in reply to tattybogle

Interesting, thank you for the reply! And that tally's with my blood test results too. t4 was around 20 regularly a few years ago and it's gradually creeping down and down now at 15.7 my lowest result ever. While my TSH was around 4- 4.5 a few years ago and is now gradually creeping up and up. Feels like I have to wait until I'm ridiculously ill for the problem to be tackled instead of just treating it now and saving a lot of crap years inbetween!

tattybogle profile image
tattybogle in reply to jkyhnm884

unfortunately you've understood the situation perfectly .

your lack of TPOab is part of the problem . NHS say TGab are related to a few other situations too, so they tend to only take TPOab seriously for Thyroid diagnosis .

Documenting Clear trends in results such as you mention can be useful for persuading them to start treatment ... so draw your falling T4 and rising TSH on a nice graph before you see anyone else and stick it under their nose while you are in front of them .

Make absolutely sure your next NHS TSH test is done as early in the morning as you can get blood draw appointment (it's highest in middle of night , then falls over the course of the morning to it's lowest around 1-2pm .. then slowly rises again) so 9 am or earlier if possible) is preferable to 10.30am when trying to show them the highest TSH level.

Don't give up hope of treatment .. some do get treated when TSH is nowhere near as high as 10 , and with 'only' TGab... a lot of is up to the discretion / opinion (attitude !) of the individual Doctor .

Perhaps i was lucky...i had TSH 5.7 immediately followed by 6.8 at next test.. so it looked like a clear increase ,with falling T4 even though T4 was well with range . But i had TPOab in the thousands, so that made my GPs decision to start levo very easy. ( I say 'lucky' .... i have no recollection what time i took those tests, but for example, if i'd had the 2nd test at 1pm, the TSH might not have appeared to be much higher at all , in fact it could have appeared to be lower... and if that had happened they might not have bothered testing my TPOab, and i would have been sent away with nothing more than a suggestion i might be depressed, just as i had for 4 /5 years before they thought to test my thyroid )

Your results will be seen as a bit more 'iffy' from a diagnosis point of view than mine were , especially if your TSH sometimes seems to go down. (hence the importance of making sure you always give them the highest possible TSH)

Don't have breakfast or coffee before TSH tests ( may possibly lower TSH. probably doesn't , but just in case)... and bear in mind TSH is likely to sit a tad higher in winter than in summer. Try to build a clear picture of rising TSH / falling fT4 / symptoms that are having a material affect on daily life.

jkyhnm884 profile image
jkyhnm884 in reply to tattybogle

Wow, thanks so much for all that. That's really helpful. I really appreciate all the advice so much! Glad to hear you got treatment and I hope you are doing much better now!

greygoose profile image
greygoose

A 'normal' TSH (euthyroid) is around 1. Never over 2. And, you are hypo when it reaches 3. And, in some countries you'd be treated at that level. However, the NHS, in all its wisdom, has decreed that the TSH has to go over 10 before they will diagnose you.

Yes, your FT3 is 'normal', but it's taking an abnormal amount of TSH to get it to that level. And, that is not 'normal'! But, I think that might be a bit complicated for an endo to grasp. lol

Your antibodies are a bit iffy. It's not that the TPOab is more valued as such, it's just that the TgAB can be slightly rasied for many different reasons, not just due to Hashi's. If they were massively over-range then yes, that would show Hashi's. But, yours are only just over-range. So, I don't think you can count on them to get you a diagnosis, I'm afraid. As you said, you're just going to have to wait until either the TSH gets closer to 10, or one of the Frees goes under-range.

jkyhnm884 profile image
jkyhnm884 in reply to greygoose

Hiya, thanks for the reply and info. Yeah it's depressing, he was almost insulted at me suggesting I might have a thyroid problem then asked "why do you think that it's the thyroid?" I explained my symptoms and constantly elevated TSH before he proudly declared it's "absolutely not" a thyroid problem causing my symptoms! Not how I expected it to go haha but I'm not giving up!

greygoose profile image
greygoose in reply to jkyhnm884

Well, endos are not the best people to see about thyroid problems, anyway. In general, they know nothing about it. They are usually diabetes specialists. So, I'm really not surprised at his reaction. Even though he is 100% wrong. He just doesn't have the education to know that he's wrong.

There are some exceptions to that rule. The problem is seeking them out.

Catseyes235 profile image
Catseyes235 in reply to jkyhnm884

you have to put it back to your doctor that if it’s not your thyroid then what the hell is it? Be quite forceful (bloody difficult when you feel rubbish) and if possible take a friend with you to back you up. It is how you FEEL that’s important.

There’s no one size fits all. ..my story is like a polar opposite with vanishingly small TSH (0.02) yet feeling hypo. Doc insisting I was being overtreated etc etc .

As others have suggested you should at least be offered a trial of thyroxine.

Best wishes and hope it gets resolved soon.

jkyhnm884 profile image
jkyhnm884 in reply to Catseyes235

Agreed, I could definitely be more tough with them but usually just end up taking their word for it as you'd think they know best! Though lots seemingly don't with thyroid problems. Thanks so much, I appreciate that! Hope you are doing good now too.

Catseyes235 profile image
Catseyes235 in reply to Catseyes235

one doctor (long long time ago) was quite happy to refer me to a psychiatrist as I’d said if there’s nothing wrong with me I must be mad!! Wish I’d gone as psychs were taught to look out for thyroid affecting mood! Would so like to have local thyroid groups for support as existed in 80s. I’m doing good now except my T3 comes in capsule form and I take half so have to carefully empty and divide like some drug dealer every night!,

Take care...

Regenallotment profile image
Regenallotment

good for you, you have had good advice here. My TSH was 4.8 then 5.5 and that’s was enough to get me a trial - push for what you want, ignore the arrogance and gaslighting. I’d recommend private testing as you can show the GP your results. I did this and felt more in control. Sort your vitamin levels out, heal your leaky gut (read Izabella Wentz) and you will feel better for it. Take care of yourself regarding energy, get plenty of rest/pace yourself. It’s a long haul back to feeling ok 🦋💚🦋

jkyhnm884 profile image
jkyhnm884 in reply to Regenallotment

Thanks so much! I will do, I could definitely be firmer during appointments but kind of get sucked in to listening to them waffle on too much. Glad you got a trial and hope things are much better for you now or at least getting there!

tattybogle profile image
tattybogle

NHS guidelines for starting treatment of sub-clinical hypothyroidism . (Sub clinical =TSH over range / fT4 within range)

nice.org.uk/guidance/ng145/...

"1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

jkyhnm884 profile image
jkyhnm884 in reply to tattybogle

Perfect! Thanks so much! I might get it tattoo'd on my forehead for extra emphasis! :)

tattybogle profile image
tattybogle in reply to jkyhnm884

Nah .. that would look crap... get this graph tattooed on it instead.

healthunlocked.com/thyroidu...

just look at how common it is for healthy people to have TSH of 4 or 5 .... NOT

SlowDragon profile image
SlowDragonAdministrator

with two test results with TSH over 5 and symptoms you should be offered a trial

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Have you had vitamin D, folate, ferritin and B12 levels tested?

If not …….that’s next step

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

low vitamin levels tend to lower TSH

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Yes ….And ultrasound scan perhaps see if any visible damage

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Most endocrinologists are diabetes specialists

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors 

tukadmin@thyroiduk.org

jkyhnm884 profile image
jkyhnm884 in reply to SlowDragon

Hiya, thank you so much for all that. Much appreciated! This place is amazing. b12 and ferritin are good and tested regularly. My folate is always tragic, don't think it's been above 2.5 on a 3-19 ref range for years. I do try with my diet but it doesn't seem to raise! Vit D is often low or if in range on the lower end, usually between 35-60 on a 50-200 ref range, I do supplement so perhaps should do a bit more.

SlowDragon profile image
SlowDragonAdministrator in reply to jkyhnm884

So it’s ESSENTIAL To get all four vitamins at GOOD levels

vitamin D at least over 80nmol and between 100nmol and 125nmol might be better

Folate and ferritin at least half way through range

Serum B12 at least over 500

Active B12 at least over 70

Many/most thyroid patients need to supplement vitamin D and vitamin B complex continuously

What were your most recent vitamin results and ranges

jkyhnm884 profile image
jkyhnm884 in reply to SlowDragon

Vit D was 60 on a 50-250 ref range. Up from 35 on previous test, I supplement with 1000iu. Folate 2.4 on a 3.89 - 19 ref range. Active B12 102 on a 37.5 to 188 ref range. Ferritin is 70 on a 30 - 400 ref range.

SlowDragon profile image
SlowDragonAdministrator in reply to jkyhnm884

Suggest you increase vitamin D to at least 2000iu daily

Perhaps higher dose in winter

And separate magnesium in evening

Start daily vitamin B complex a couple weeks later

Retest thyroid and vitamin levels in 6-8 weeks after adding last vitamin

Consider taking a selenium supplement once a week

Perhaps a zinc supplement once week

theguthealingninja.com/blog...

SlowDragon profile image
SlowDragonAdministrator in reply to jkyhnm884

Ferritin low for a bloke

Look at increasing iron rich foods in your diet

When hypothyroid we frequently have low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

SlowDragon profile image
SlowDragonAdministrator in reply to jkyhnm884

Vitamin D

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator in reply to jkyhnm884

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement

 

jkyhnm884 profile image
jkyhnm884 in reply to SlowDragon

Thanks so much SlowDragon, that's amazing, I feel like my reply can't really do justice to your awesome info but thanks again. I really appreciate it, you are a legend!

SlowDragon profile image
SlowDragonAdministrator in reply to jkyhnm884

Work on improving low vitamin levels

Come back with new post once you get FULL thyroid and vitamin testing…..end of Jan….early Feb

Earlier if you feel worse

Blearyeyed profile image
Blearyeyed in reply to jkyhnm884

Have they tested these recently?Both B12 Deficiency and Folate Deficiency Anaemias can reduce your ability to absorb and metabolise other nutrients like Vitamin D , and the use of enzymes in the body.

Increased thyroid dysfunction can be part of a vicious circle with B12 or Folate conditions .

I wouldn't start upping the supplements yet but have your vitamin levels checked again. If you are having Fatigue and various Neuro symptoms you should get the deficiencies on record and get guided supplements from your GP then have tests done again , including your thyroid panel after 4-6 weeks of oral supplement but a few days break in taking them to check if the levels have improved or you need added help.

jkyhnm884 profile image
jkyhnm884 in reply to Blearyeyed

Yep, end of October time, I often check myself with medichecks a few times a year and my folate is always crap and this time was no different at 2.4. Active B12 is usually always in the middle and was again this time so that's something at least! Thanks for the reply and advice, much appreciated.

Bluebell999 profile image
Bluebell999

I had to ask my gp when my levo was reduced to a ludicrously low 12.5mcg, for an appointment to an endo. My hashis had been managed by my rheumatologist as one of many autoimmune problems, but as I hadn't seen him in nearly two years because of covid, he was unaware of my thyroid changes.

The endo replied to my gp, and did not cc me in, I found out on Patient Access, that he thought I had "transient thyroiditis, probably since diagnosis" My confirmed Hashis antibodies diagnosis was over 18 years ago! I had no appointment and my gp had no instructions to help me.

After a few months I was obviously unwell and I again had to ask my gp for an endo appointment, this time at a different hospital.

I saw another endo within weeks who carried out more blood tests and an ultrasound scan. The result was I now have confirmed antibodies for Graves with an enlarged thyroid and nodules.

Do ask your gp for another appointment with a different hospital, or endo at the very least. You are entitled to a second opinion.

If I had not pushed for the first appointment which had a disappointing result, I would not have pushed for the second. You are the only one who knows there is something not quite right with your body.

You deserve better.

Good luck.

jkyhnm884 profile image
jkyhnm884 in reply to Bluebell999

Hey. Thank you! I absolutely will, I'm determined not to keep suffering even if some days it does get me down that I seemingly can't get anywhere. Sorry you had to go through all that, it feels like we have to do most of the tests, research etc ourselves to get somewhere which is ridiculous! Hope things are better for you now.

Sparklingsunshine profile image
Sparklingsunshine in reply to jkyhnm884

My situation was a bit funny really. I had had my suspicions for years that my thyroid was struggling, I also have Fibromyalgia which has a lot of symptoms similar to underactive thyroid. My GP would test TSH only, it would come back as high in range, but still in range and that was that. Always around 4.5, 4.6 on one test it was 3 but that was the lowest ever. In the end, feeling like a hypochondriac I just concentrated on tackling my Fibro.

In Jan 2020, before covid, I started experiencing breathlesness whilst walking. I'm pretty fit and exercise and walk a lot, so being breathless was weird for me. I do have asthma but it wasn't wheezing or tight chestiness. I thought I was maybe anaemic again.

So saw GP who ran loads of blood tests and to my great surprise my TSH was now over range and my FT4 was below range. Finally my flabby thyroid was on its last gasps. They told me to get thyroid test again in 3 months, so this was now February 2020, so due in May.

Funnily enough the breathlessness went away, but my repeat bloods in May were worse, TSH even higher, FT4 now lower and well below range. I was feeling tired as well and low in energy so got offered Levo and started in June 2020. I do sometimes wonder if I should have been offered it much, much sooner. If I lived somewhere not in UK I would have.

But because my TSH was in range ( I promise you you will come to hate that expression) nothing else was ever investigated. In the end I almost got the diagnosis by accident.

Bluebell999 profile image
Bluebell999

There has been a lot of information here which really disagrees with your endo's view. I totally trust this site, the admin are very knowledgeable and informative as are many members.

My own feeling is that you have gone as far as you can with this endo, I really would ask for a second opinion, preferably one who is competent with thyroid problems.

I looked up a Thyroid specialist who not only worked privately but also at the other hospital. I was prepared to go privately if I had to.

My gp was happy to arrange this on the NHS as I think she realised the previous endo did not want to know by the tone of his letter. It also saved me a lot of money, thank goodness.

Fortunately she was familiar with the second endo and her thyroid credentials, so it was not a problem. I just wish she had chosen the second endo first!

jkyhnm884 profile image
jkyhnm884 in reply to Bluebell999

Yeah it's great, the info and replies I've received are amazing so thanks to you and everyone else. I really appreciate it! I'll definitely find another doctor, I don't mind going private, the cost is annoying but if it potentially gives me a much better life after then it's worth it, and I'm near London so should be loads of options but it does feel like roulette on whether I get one who'll prescribe under TSH 10 or not so not sure what to do haha!

SlowDragon profile image
SlowDragonAdministrator in reply to jkyhnm884

Getting vitamins optimal first ….and retest before considering booking any consultation

Might want to consider testing testosterone too

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors tukadmin@thyroiduk.org

SlowDragon profile image
SlowDragonAdministrator

How Hashimoto’s affects men

thyroidpharmacist.com/artic...

McPammy profile image
McPammy

It might be worth trying a private only endocrinologist. Someone who is focused on all endocrine issues and who will spend the time to investigate properly. Not always do you need to travel to see a private only endocrinologist. Mine does zoom and telephone consultations. What he needs is blood test results and a Gp referral letter. Blood test results is generally what they go on. But you can always have a face to face consultation if you don’t mind travelling. I saw many NHS Drs during my really bad period suffering with very low conversion of T4 to the most important T3 hormone. It was only going private only that I was diagnosed and given treatment. If you’d like the details of my endocrinologist please just private message me. Private only is better than NHS/private as the latter follows NHS guidelines which brings you back to the same problem

Witchinghour profile image
Witchinghour in reply to McPammy

My endo is private and NHS and he prescribes NDT and T3 and isn't bothered by my low TSH. :)

I think it very much depends on the endo.

RoseF3 profile image
RoseF3

I was diagnosed privately with a TSH of 3.35 and positive TPO antibodies - I was very symptomatic. The endo I saw said there were newly released guidelines which meant he could diagnose me without a TSH over 10 now - I’m afraid I don’t know what the guidelines are but that’s what I was told.

jkyhnm884 profile image
jkyhnm884 in reply to RoseF3

Thank you. Glad to hear you got diagnosed. Yep, someone put the guidelines in here and it suggests I should be able to get treatment, I'm gonna find another doctor and wave the guidelines in his face!

tcpace profile image
tcpace

You are obviously hypothyroid. Untreated hypothyroidism puts you at risk of cardiovascular and other issues (e.g. elevated cholesterol). I was in the same position and mentioned these risks to my GP. He had no qualms in putting me on 25mcg T4 as a trial. Subsequently my TSH kept rising and my T4 dose is now 100mcg (TSH 2.9, which I think is still too high).

jkyhnm884 profile image
jkyhnm884 in reply to tcpace

Yep, it's frustrating seeing all the other little things on blood tests like slightly elevated cholesterol which is often seen in people with thyroid problems yet no one seems to take any notice. Happy to hear you got treatment and hopefully your tsh comes down further in the future!

Sparklingsunshine profile image
Sparklingsunshine in reply to jkyhnm884

I wonder if your gender is against you, as most thyroid sufferers are women, maybe your doctor isn't taking it as seriously as they should.

There's often bias, sometimes unconscious, sometimes not, when a patient presents with a possible issue that doesn't fit the textbook profile of what someone with that condition should look like.

jkyhnm884 profile image
jkyhnm884 in reply to Sparklingsunshine

Could well be. I don't have a family history either, not sure if that's common or not in people with thyroid problems but all the little things probably add up to them not wanting to do anything.

Eddie83 profile image
Eddie83

I'll tell you what happens when you have an incompetent doc: I lost 21 years out of my life, feeling like hell, with a situation similar to yours. A healthy TSH is in the 1-2 range. Your TSH is being driven up by TPO and/or TG antibodies which are destroying your thyroid; you will be in a hellscape in a few years unless you deal with it. In my case, I had bad stomach health/digestive tract problems due to gluten intolerance, which wasted my gut (flattened the villi). A wasted gut will likely precipitate autoimmunity. You need to get on a low-allergen diet which is free of the most problematic allergens such as gluten, dairy, soy. This would be greatly helped if you were able to get access to a competent doc who understands environmental health problems ... but there are very few of those, and I doubt NHS has any doc that does that sort of thing.

Getting onto levothyroxine and/or liothyronine at this point might, or might not, help. When my gut was wasted, before dietary change, I could not tolerate levo; my body was completely unable to process it. Taking levo would send me into high, intolerable anxiety. It took about 9 years to heal my gut. Now I am able to take levothyroxine 100mcg and liothyronine 7.5mcg daily, and feel well with TSH=0.6, with FT3 & FT4 both in normal range.

There are tests which can tell you if you are reacting to problematic foods. In my case, gluten intolerance was diagnosed with gliadin antibody and tissue transglutaminase tests. There are similar tests for other allergens.

jkyhnm884 profile image
jkyhnm884 in reply to Eddie83

Jeez that's awful. Sorry to hear you suffered for so long but glad things are at least better now. Thank you for the advice mate, much appreciated!

Clydeiknowyou69 profile image
Clydeiknowyou69

I know exactly how you feel, have now had three over range TSH, highest 5.75, positive for TPO antibodies, was told if my TSH was raised the third time I would get treatment. Now they want me to wait another three months. Fought to speak to a GP, phone appointment 12th December. The symptoms are awful. I am also folate deficient, had to ask for that to be treated. They should treat the patient, not go by numbers. Please don't give up.

jkyhnm884 profile image
jkyhnm884 in reply to Clydeiknowyou69

What a shambles! Hope your next appointment gets you some treatment. Good luck with it all, I definitely won't be giving up either.

jkyhnm884 profile image
jkyhnm884

Just an update. Had a private ultrasound today which clearly showed Hashimoto's the awesome lady said. So hopefully I'll finally start getting somewhere now! Thanks to everyone again for the advice and kind words.

Clydeiknowyou69 profile image
Clydeiknowyou69

Hopefully the results of your ultrasound scan will at the least get you started on treatment. It's a blooming nightmare so it is, that's being polite about it. Good luck.

jkyhnm884 profile image
jkyhnm884 in reply to Clydeiknowyou69

Thank you! Emailed my endo today who said it doesn't make a difference and just need to check thyroid levels in 6 months so you are right, it is a nightmare haha! Looks like I'll have to find another doctor.

You may also like...