Why do I bother?!?

[Pinkisbest1]

Sorry, this is just a rant. I've just seen another NHS endocrinologist who can't find any thing wrong or any reason to pursue any course of action. My blood results are in the normal range so in spite of having all the symptoms of underactive thyroid it's all because I'm fat. Funny how I was fat before with only minimal issues. I'm not going to bother finding the latest tsh or t4 results suffice it to say they are at the bottom/ top of the range. He tried to argue that although I had symptoms, there was nothing wrong with my thyroid. I tried to explain about the inaccuracy of tests I have had throughout my life with all things but apparently that doesn't matter. Pause rant.I have already booked to see a private endocrinologist. Fingers crossed he isn't as ridiculous as the ones I've seen so far.

[Regenallotment Ambassador]

sorry to hear this, if you can dig out the results and ranges our friendly members could share their experiences and advice.

Were tests early morning? (This helps with diagnosis when you are looking for TSH at its highest).

No biotin containing supplements that could skew results.

Do you have antibody test results? TPO and TgAb?

Could you list your symptoms?

Any pituitary glad history?

[Pinkisbest1 in reply to Regenallotment]

Hi Regenallotment,

I hope you can read the information in the image. These are just the most resent test results. As far as symptoms go, I have a full set: chronic fatigue, pins and needles in my hands, arms, feet and legs, scalloped tongue, my whole body is swollen and aches, my muscles and joints are stiff and painful, I am overly hungry and thirsty all the time, I cannot regulate my body temperature, I have anxiety and panic attacks, my skin, hair and nails are very dry and flaky, I had very slow heart rate (30bpm) for 3 months but it went within 3 weeks of taking thyroxine.

I currently have on prescription: vitamin b12 injections every 3 months, 45,000IU of vitamin d a week, Sanatogen A-Z 1/day and 20mg of omeprazole, then I take 375mg magnesium/day. I am going to ask for vitamin k and to cut back on the vitamin d as it isn't absorbing properly. I'm on 50mcg 3 days a week and 62.5mcg 4 days a week of levothyroxine.

I have had several brain scans over the last couple of years because I had a suspected pineal cyst. Nothing untoward was found.

Unfortunately, it isn't possible to have blood tests done in the morning as I cannot get an early test and I cannot get to the hospital in time because of having carers so it isn't ideal.

Thanks

A spreadsheet of results

[SlowDragon Administrator]

I have already booked to see a private endocrinologist. Fingers crossed he isn't as ridiculous as the ones I've seen so far.

Strongly recommend you get FULL thyroid and vitamin testing BEFORE any consultation otherwise it’s waste of time and money

what vitamin supplements are you taking ….if any

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and 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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

[Pinkisbest1 in reply to SlowDragon]

Thank you SlowDragon, I have the tests at lunch time or early afternoon as that is the first appointment I can get. It is not ideal I know but it's the best I can do at the moment. I have attached my results to my earlier reply... I hope they are readable. I have an appointment later today (Friday) with the GP to try to get vitamin k prescribed to help with vitamin d absorption. I have had an on-going problem with vitamin d which is why I was advised to have a sleeve gastrectomy in 2017, hence all the prescription vitamins. I just hope something can be done to help me get better.

[SlowDragon Administrator in reply to Pinkisbest1]

GP won’t prescribe K2

Just buy vitamin D with K2 included

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...

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

Why are you taking omeprazole?

Any PPI will significantly lower vitamin levels, especially magnesium and B12

Sometimes iron levels too

gov.uk/drug-safety-update/p...

pmc.ncbi.nlm.nih.gov/articl...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

onlinelibrary.wiley.com/doi...

sciencedirect.com/science/a...

[Pinkisbest1 in reply to SlowDragon]

Thank you SlowDragon. I am taking everything because I had bariatric surgery and have to take them for life. I can't take the spray as I had a very bad allergic reaction to it. I have specific named/branded vitamins and minerals as I had multiple problems when given random vitamins. It took 4 tries to find ones that didn't send me to A&E. I had problems with vitamin d before the surgery and I only started taking omeprazole following surgery. I was very badly advised by an endocrinologist who I went to querying my thyroid. He said it was fine and said that if I had the surgery and lost weight that would improve my vitamin issues. That entire situation is why I know that it isn't my weight that is the problem. I was much lighter then and had fewer problems. The surgery and covid have made everything worse.

[SlowDragon Administrator]

Previous post here

healthunlocked.com/thyroidu....

Are you STILL only on 50mcg Levo

[Pinkisbest1 in reply to SlowDragon]

I'm on 50mcg 3 days a week and 62.5mcg 4 days a week.

[SlowDragon Administrator in reply to Pinkisbest1]

That was a very small increase

How long have you been on this dose

Have you retested since

Test 6-8 weeks after each increase

[Pinkisbest1]

I have been taking 50mcg since August and the increased dose since November. The endocrinologist refused to do any blood tests to check the dose as she said I didn't have a problem with my thyroid. I was given the thyroxine by a more junior endocrinologist who listened to my symptoms and prescribed it before she had the tests. She then got told off and I was told thatas I was on it I could stay until I got overactive thyroid symptoms bit they were not going to test me. The blood tests I had recently were done by the bariatric consultant who I recounted the story to. The reason I was able to get an increased dose is because I put in a formal complaint that they weren't following NICE guidelines and because they accused me of only feeling better because I got what I wanted, not because of the thyroxine. Apparently, the heart failure I had was cured because of a placebo effect.

[Pinkisbest1]

Some good news - my GP is not opposed to prescribing vitamin k but has asked for further advice about what combination of vitamin d and k would work best. I also asked for and got a prescription for antihistamine so that I can take pain killers and water tablets that will help with the pain and swelling. I have also been referred to a rehabilitation service to help me get back to full mobility. I'm taking all of that as a win today. 🏆

[serenfach]

Rant away! Many of us know exactly how it feel to be dismissed, with stupid reasons. I hope the private Endo can help. Sending a hug.

[Pinkisbest1 in reply to serenfach]

Hi serenfach,

Thank you so much. I definitely need a hug right now!! I'm sending one back to you for when you need one. 😀