Thyroid UK

Would really like some advice please

Hi and help please, new to the forum, I am a 31 year old female here, given a diagnosis of general anxiety by my endocrinologist. I have tendonitis, had steroid injections in my hip. Diagnosed with impingement of the hip joint, tendonitis of the knee. I have pain in hips, back, knees, wrists, sometimes elbows. Diagnosed with acid reflux in 2016.I think I have Hashimoto disease? I have dry skin, breaking nails, weight gain but still thin. Lost 2 jobs through brain fog and confusion and memory loss. Any advice welcome, thank you for reading!

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So sorry to read something like this...you've come to the right place x

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Thank you :)

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Hello & welcome Sammy,

I didn't know endocrinologists were experts to diagnose anxiety!

If you have any blood tests e.g. TSH FT4 FT3 TPO & Tg antibody tests - please post them for folk to offer helpful suggestions. Also please post any vital mineral testing e.g. iron/ferritin folate/B12 & vitamin D - if you haven't had these tested please do. Some of your symptoms sound familiar to Thyroid disease, here's a list from our main TUK site.

thyroiduk.org.uk/tuk/about_...

I presume your GP sent you to an endo thinking they would help you, it looks like you'll have to go back to your GP & ask for more tests, especially B12. J x

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TSH 6.5 (0.2 - 4.2)

FT4 13.7 (12 - 22)

FT3 3.3 (3.1 - 6.8)

I also take vit D and iron and B12

Ferritin 27 (30 - 400)

Folate 4.1 (4.6 - 18.7)

Vitamin B12 335 (190 - 900)

Vitamin D 42.1 (25 - 50 deficiency. Supplementation is indicated)

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A raised TSH & low FT4 FT3 indicate hypothyroidism, doctors often (wrongly) don't treat until the TSH hits 10 'tho. Do you have the ranges usually (in brackets)

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Sorry now added

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Thanks - low levels indicate you are hypothyroid, I presume the low ferritin etc is before supplementing?

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That's correct yes. I was only on a 8 week course

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and now you've stopped?

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The vitamin and mineral levels were taken in August 2017 and yes I stopped once the course was finished

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unless they investigate why your vital mineral levels are low, you should continue to supplement until your levels are high 'normal' range or you feel better!

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Well I was under a haematologist and he said an 8 week course would have been enough for my levels to rise.

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They probably would, although I don't know your doses & I'm no medic.

However when you stop they lower.

Us Hypothyroidies are prone to low levels of vital minerals due to slow/faulty gut absorption, in fact low levels of vitamins can lead to hypothyroidism as the body will hibernate if it doesn't have enough 'stuff' to work with/make hormones etc.

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I was on 1 iron tablet a day, previously on 3 a day from 2012 - 2016 then just one a day from August 2017 to when I finished in October 2017

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So you have been anaemic for some time, it is recommended to take iron tablets with vitamin C/orange juice, more efficient and helps stop constipation too (but I don't take iron tablets myself so can't recommend a good one, sorry).

Just a story, my workmate was severely anaemic for years & had spine injections for back pain, she sorted it & now runs up hills! :)

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Hi Sammy, Have you tried a whole food iron pill? I cannot process elemental iron in pills, it causes widespread inflammation and pain in a matter of hours because of a bad gut from chronic stress. The one I use is made with yeast and broccoli.

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{Jazzw puts head in hands, weeps a little}

Yes, you do have hypothyroidism. Your endocrinologist is an idiot. Why oh why can’t he/she see that?

Do you know if you have positive antibodies? Any mention of TPO or Tg AB in your results?

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Hi no mention of TPO or TG antibody levels

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Was sent to endocrinologist regarding possible hormone imbalance due to excessive hair growth on face and body

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Oh my goodness Sammy, so sorry you've not had good treatment. TSH over 20? Yes yes yes you need treatment. No wonder you don't feel well. I hope you feel better soon.

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Thank you lightbeam :)

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Have a look at this link, all hormones are connected, in one way or the other

cks.nice.org.uk/hirsutism#!...

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No TPO or TG

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OK. How old are those results - are they recent ones?

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They were taken October 2017, I had thyroid checked before in August 2017 and I had a TSH above 20! Surely I needed treatment for that?

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Again, they would have waited & tested again to see if that was just a one-off, but I was treated at TSH 19 (after many years & half a thyroid). I found supplementing Vitamin D lowered my TSH & pain.

Please go back to your GP, and ask for more tests including antibodies and for your hair problems too.

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Ok I will. Thank you

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& you could take the list of signs/symptoms with you for your GP as evidence you are hypothyroid, as well as clinical raised TSH & low FT3/FT4. Best of luck & hope you feel better soon. J x

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FT4 was 10.7 (12 - 22) as well

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then in range at 13.7 - you must have been doing something to help increase it, or perhaps it was summertime.

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No TPO or TG antibodies but thyroid peroxidase antibodies? 271 (<34)

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yep they're TPO antibodies - raised confirms autoimmune thyroiditis - most common sort being Hashimoto's

A GP should recognize raised antibodies confirm you ARE hypothyroid and start you on treatment - the treatment is the same with or without antibodies.

However optimising your vital minerals will help you with or without treament of Levo (T4) - it needs good levels of them in order to work properly.

Best wishes, Jane :D

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Ok thanks I have found new results which show I am overtly hypothyroid so will insist on treatment

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Does it actually say "overtly hypothryoid"

can your endoknob read???

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Yes it says overt hypothyroidism

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Highlight it & put it under your GP's nose!

Unbelievable!

More info on diagnosis & overt hypo here....

thyroiduk.org.uk/tuk/about_...

Keep us updated! x

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Definitely you needed treatment - how bad are these doctors/endocrinologists that they leave someone undiagnosed/unmedicated and desperately in need of thyroid hormone replacements.

You should write and complain when you are properly diagnosed and most members would definitely say you are hypo.

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Blood tests always have to be at the very earliest possible, fasting (you can drink water) and if you were taking thyroid hormone replacements you'd allow a 24 hour gap approx between last dose and test and take afterwards. This keeps our TSH at its highest and may prevent an unnecessary reduction in dose as it seems to me they only look at the TSH (thyroid stimulating hormone - from the pituitary gland) and the T4, the inactive thyroid hormone!

Ask GP to test:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. (he may not and if you can, you can get the ones not tested by a private test).

He should definitely test B12, Vit D, iron, Ferritin and folate. Deficiencies are usual if hypothyroid and we must have them at optimum.

Tick off your symptoms and show to GP (they don't know any so we have to educate them a little).

thyroiduk.org.uk/tuk/about_...

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No TPO antibodies or TG antibodies but thyroid peroxidase antibodies? 271 (<34)

Patient Access results show TSH 10.1 (0.2 - 4.2) FT4 9.2 (12 - 22)

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TPO =Thyroid peroxidase antibodies - well above range

(see my reply above)

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Your journey sounds very similar to mine, I am convinced I have Hashimoto. Just want to put a name to the long list of things going wrong! Have you had a thyroid test?

I feel like it is such a fight at the doctor's, especially when they look at you in a 'What now!?' kind of way! Anyway, make yourself be heard and ask for more tests, that is what I am going to do :o)

Good luck x

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Yes

TSH 6.5 (0.2 - 4.2)

FT4 13.7 (12 - 22)

FT3 3.3 (3.1 - 6.8)

TSH was above 20 in August 2017, FT4 10.7 (12 - 22)

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You are very hypothyroid - what a disgrace. Untreated and undiagnosed.

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too familiar a story :(

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You might expect this in a third world country but it would appear that the UK is even below a third world with all the Endocrinologists who cannot or will not diagnose, despite very unwell patients seeing them. Even GPs cannot as I know full well through experience.

There has to be an uprising of some sort to knock some sense into these 'supposed to be' knowledgeable.

No wonder Dr Skinner tried to open their closed minds but instead he was the one bullied by professionals.

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They don't want to appear stupid. I think the endo could have been looking in the wrong hormone direction or probably just another diabetic 'specialist' slept through the thyroid lecture or paid a mate to do his exams! lol!

Sammy even has "overt hypothyroid" written on her test results!

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So they need an interpreter to point out exactly what 'overt hypothyroid' really means. :)

Probably doesn't even know where the thyroid gland is situated.

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In the cotton wool between their ears?

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You need a new endo and sadly it is a common thing that endos are idiots and gps, you are in charge of your health bite the bullet and keep pestering till you get what you want, people here are very knowledgeable and docs or endos hate it when you mention TUK as they know you have been researching and you are aimed with knowledge. You are entitled to the best and people here do not get it and sadly im one of them people who has had bad treatment.xx good luck.

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Welcome to our forum and am sure members will also respond.

Your story isn't unusual at all. In fact it is quite common.

Do you have any copies of your blood test results with the ranges. I know I never thought to ask for them in a previous life (before hypo) but I do now.

I don't think the Endocrinologist did a Full Thyroid Function Test and probably no antibodies either. Hashimoto's antibodies have to in the blood for a diagnosis but you seem to have some knowledge, probably because you've been trying to get a diagnosis. Some appear to be very insensitive and intolerant but in fact I think they are all poorly trained and cannot recognise by clinical symptoms that the patient is hypothyroid.

The main problem in the UK is that for some unknown reason they have decided that people have to have a TSH reach 10 before diagnosing, whilst if we lived elsewhere in the world we'd be diagnosed when it is 3+ with symptoms.

You can tick off your symptoms below:

thyroiduk.org.uk/tuk/about_...

I am really sorry you've also lost two jobs and I know quite a few members lost theirs or had to give them up as they were too unwell.

What you need is a new blood test and ask GP for a Full Thyroid Function Test. He probably wont but those not tested maybe you can get those privately which might be difficult if you're not working.

All blood tests for thyroid hormones have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours if you were already on thyroid hormones and take afterwards.

Ask GP to also test B12, Vit D, iron, ferritin and folate and give your GP a copy of your symptoms which you have ticked. You can tell him you've been given some advice by the NHS Choices for help/advice Healthunlocked Thyroiduk.org.uk.

Always get a print-out of your results, with the ranges. Ranges are important as labs differ and it makes it easier for members to respond.

Post your results onto a new post when you get a copy from the surgery. We are entitled and some charge a nominal sum for paper/ink.

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Yes

TSH 6.5 (0.2 - 4.2)

FT4 13.7 (12 - 22)

FT3 3.3 (3.1 - 6.8)

TSH was above 20 in August 2017, FT4 10.7 (12 - 22)

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I also take vit D and iron and B12

Ferritin 27 (30 - 400)

Folate 4.1 (4.6 - 18.7)

Vitamin B12 335 (190 - 900)

Vitamin D 42.1 (25 - 50 deficiency. Supplementation is indicated)

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No TPO antibodies or TG antibodies but thyroid peroxidase antibodies? 271 (<34)

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The following is an excerpt from the link below:

Thyroid peroxidase antibody (TPOAb) is the most common antibody present (in up to 95% of those with Hashimoto’s), and often antibodies against thyroglobulin (TGAb) are found as well (around 80%). These antibodies may appear decades before a change in TSH is detected.

so it would seem you have an Autoimmune Thyroid Disease called Hashimotos.

thyroidpharmacist.com/artic...

(I am not medically qualified but had undiagnosed hypothyroidism, which I had to diagnose myself with the help of a first aider).

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Ok thanks will ask GP for treatment because my results on Patient Access show I have overt hypothyroidism

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He also has to act on your woeful vits/minerals at the same time.

Believe me we have to Do It Ourselves otherwise we will never get well. I am fortunate now that my symptoms have resolved.

Tick off your symptoms and give him a copy and it is disgraceful they cannot read blood test results. The fact is they know none at all.

thyroiduk.org.uk/tuk/about_...

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To clarify........

thyroid peroxidase antibodies 271 (<34)

--- raised TPO indicates autoimmune thyroiditis (likely Hashimoto's)

Patient Access results show TSH 10.1 (0.2 - 4.2) FT4 9.2 (12 - 22) --- GPs usually treat at 10 (or before!)

Overt hypothyroidism --- you are hypothyroid!

Obvious symptoms - Dry skin, weight gain, brain fog, stomach issues, joint pain etc.

Pretty text book really - if doctors still have textbooks!

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Oh my goodness!! Just read all of this post! Am so sorry youve not been treated for Hypothyroidism when its harder to find a more obvious case of hypothyroidism!! What on earth is going on in the NHS? Its beyond a joke. Shockng!!

Am afraid your doctors & the endocrinologist are just plain incompetant! Am so sorry you have lost two jobs due to the ill health they've caused you by lack of treatment!! Disgusting. Shame they dont have to hand their salaries over to you -maybe that would get them to change their tune!!

In your shoes not only would I demand an appointment with your GP I would take a friend/partner with you to witness it. Your GP should immediately put you on 75mcg of levothyroxine, sign you off as sick if you are at work, review your meds after 6-8 weeks , incrementally increasing your dose in 25mcg increases every 6- 8 weeks until your blood test show your ft4 & in ft3 are in the top third and or towards the top of the range if needs be and you feel well. They also need to adress your vitamin and mineral deficiencies. That will ensure maximum uptake of thyroid hormones into your cells.

Id also write a polite letter to the GP Practise Manager outlining your serious concerns over the lack of diagnosis and treatment, asking for an explanation.

The good news is you will get excellant support and advice on here. We may not be doctors but we have all learnt the hard way that where hypothyroidism is concerned you have to become the expert yourself, be your own advocate and if necessary be prepared to self medicate. Our health and well being is worth far more than the erroneous dogma and shocking ignorance that exists in the nhs medical fraternity in the uk.

What I dont understand is how the situation with diagnosis and treatment for hypothyroidism just gets plain worse year on year. The medical fraternity have actually got worse not better at diagnosis & treatment. Its almost like they just dont want to believe what they see infront of them, whether its a patient with an obvious presentation of hypothyroidism or blood tests showing a raging case of hypothyroidism.

Am speechless!!

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Hi sending empathy big time!!! You are in right place and I could have written your post about general anxiety and jobs, infringes so much

Hugs

We can!! Xxx

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Ps

I meant to say I've had groinpain six years although told nothing much wrong with hip, I am due x ray update, But a little voice inside wonders how much this might improve when euthyroid ( balanced) 🤞🤞 at least if feeling well can handle it better xxx

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