Would appreciate feedback on Thyroid test done with Medichecks. Fasting test. 9am. Last dose of Accord Levo previous morning. I have been Gluten free for over 12 months(not coeliac)I am Hasimoto
TSH 1.19 (0.27 -4.2) Free T3 4.2 (3.1-6.8) T4 21.1 (12-22) Vit D 63 (50-200) VitB12 active 105 (37.5-150) Ferritin 122 (30-400) Folate 7 (>3.89) CRP 0.42 (0-5)
TGA 259 (<115) TPA 361(<34)
The symtoms I have are worsening and only started when found to be underactive in August 2020. Firstly the stomach bloating and constipation started after about 2 months going on levo. This is worse today even taking laxatives despite healthy diet of fibre. Dizziness, Nausious, Cold hands(renauds) cold feet and numb until recent warm spell now feet burning on soles when in bed at night time. Tinnitus. Broken sleep pattern and tiredness leads to no motivation to do anything even though I feel I want to. I have to push myself.
Drs have done additional full blood count which came back normal . Due to having only one adrenal gland I requested cortisol test. This reading was 470nmol/L. As the test was done at 8.30 am on a fasting test this was a normal result for males. Any advice from the good people on here is much appreciated as my quality of life has deteriorated. When I consulted with another GP in the same practice he said whoa theres alot going on here. Perhaps we can send you on an anxiety course!! What again I said!!!I told him straight that I am one if the most positive minded persons you will meet. Help me sort the root cause.
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The root cause of what? Your anxiety and constipation? Or your Hashi's?
The cause of your symptoms is right there, above: Free T3 4.2 (3.1-6.8). Your FT3 is too low. T3 is the active hormone, needed by every single cell in your body. When it is too low it causes all sorts of symptoms.
Anxiety is a hypo symptom - your brain needs a hell of a lot of T3.
Constipation is a symptom for two reasons: a) when you're hypo (i.e. your T3 is low) your whole system slows down, including your gut. b) when your T3 is low, your stomach doesn't secrete enough stomach acid, and low stomach acid causes/exacerbates constipation.
Your FT4 is high - possibly too high - but you are not converting it well to T3. This is typical of Hashi's people. But could be made worse by your lowish vit D and folate.
Doctors know very little about thyroid, and next to nothing about Hashi's. They have no idea what T3 is or what it does, and are pretty ignorant about nutrients, because they not taught very much about any of that in med school. They've been taught that hypo is no big deal, and they don't know many of the symptoms, so they are loath to admit that common hypo symptoms like anxiety are due to low thyroid levels. We all have to learn about our disease, and pretty much take charge of our treatment if we want to survive.
So, have you ever considered your stomach acid levels?
Have you ever considered buying your own T3 and self-treating with it, seeing as they consider T3 as quackery and witchcraft? lol Honestly, it beggers belief! As I said above, they just know nothing about T3, what it is or what it does.
Hi. I am taking probiotics....last 2 months. I have just been reading the link SD sent me for latest info regarding which CCG's approve Liothyronine. My CCG does but my practice appears to have not prescribed. This perhaps explains the brick wall attitude I have had over the past 12 months. I have a private appointment with an Endo in August. According to Thyroid UK he has prescribed T3. He practices in a neighbouring CCG. So how will that work if he prescribes it.? Will my GP then have to supply it? Or will I have a battle. I dont really want to change GP as i have been at same over 60 years...
Hi. Thanks for reply.I am on 125mcg levo per day. I do supplement with Vit B +k spray but not as much probably as I should. I have persevered with gluten free but to be honest I dont think I have seen any benefit. Do you think I should go gluten again to experiment....I'm not sure. I was supplementing with magnesium citrate for gut which did help some but Dr advised it might not be good for Kidney....I've only got one since 2018 and I'm very protective of it. What worries me though is I'd any damage may occur to it from been hypo and the symptoms I have. So. I asked Dr about seeing Endo and the possibility of trialling T3. She said in our CCG they wont prescribe T3. When I asked why some patients can and others cant she called the Drs Quacks and Witchcraft.!!!
I would not be deterred this is my life. So I rang the Thyroid UK as you have suggested previously and booked an Endo appointment with one who they said has prescribed T3 in the past.I requested my GP to write a referral which they cant refuse. This Endo was on the list and started in 1996. My appointment is in August. The lady I spoke to at Thyroid UK was extremely helpful. Cant speak highly enough
Hi SD. Thank you for sending me those links. I didnt reply straightaway as I needed time to digest the info. Can you help me please to move forward. So my CCG is North Yorkshire ...but in the list of GP practices mine is only one of 4 NOT prescribing Liothyronine. Why is it that some practices are prescribing and some arnt. Even yesterday when discussing my test results with GP I said to her ...but you wont test T3 level will you? She replied NO. That it's not important. Can you tell me SD is it down to cost/budget if each practice. ? When I challenge them she states that she dosnt want to end up in the courts!!! Well armed with this info that is where alot will end if they dont change their stance. I am fuming!!Why is it still a postcode lottery?
Look how many decades it took to turn around the ludicrous believe cigarettes were GOOD for you health
Many medics are poorly educated in thyroid disease, even endocrinologists
Vast majority of endocrinologists are diabetes specialists and useless for thyroid
Most GP’s learn about whole endocrine system in a day or two at medical college….and thyroid disease in a few hours…..where they are told …”hypothyroidism is easy to treat…..pop a little white pill daily, bring TSH down under 5 and patients are fixed!”
Clearly that’s garbage
Current situation is wholly unacceptable
There are almost 2 million people in the U.K. on levothyroxine and (by their own admission) medics accept that 10-20% don’t do well on levothyroxine
That’s 200,000-400,000 patients, vast majority are middle aged women (an invisible group)
What can you do if your GP doesn’t agree
Well a GP isn’t allowed to initiate prescription for T3
To get T3 prescribed on NHS you must see an NHS endocrinologist who agrees you have clinical need
A) there are hardly any NHS endocrinologist who are thyroid specialists
B) there always was a long wait (previously approx 6 months) post Covid it’s more like 12-18 month wait
C) if TSH and Ft4 are within range endocrinologist will often refuses to see patient
D) under nhs system you often only get junior endocrinologist, not the named head of department
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3.
Majority are private, but not exclusively
tukadmin@thyroiduk.org
Meanwhile
Work on improving low vitamin levels
Also look at getting Dio2 gene test done
Assuming you test positive for this common gene variant it can be concrete proof you need T3 added and can help get NHS to agree to fund
The Endocrinologist I am seeing in August is one from the list I obtained from Thyroid UK. They have told me he has prescribed T3 in the past. He does NHS and private work. I have gone down the private route where waiting list was only 3 months. I had to get my GP to do a referral letter.....even then the GP said....we have Endocrinologist in our CCG which we can refer you to. But the GP had already told me the Endo they wanted to send me to wouldn't prescribe T3. I have had all these obstacles thrown at me over the past 18 months. I feel so misled by my GP's over my Thyroid treatment....but find them very good with treatment for other medical problems I have had. It seems as if they set their own agenda for prescribing. When other practices in the same CCG are prescribing T3.....is it down to cost. ???I'm thinking of taking it to my MP
Price was increased to £268 at its maximum for 28 tablets
NHS answer was to remove prescription from hundreds of patients and stop majority of new prescriptions
Now there are 4 suppliers and price dropping, currently NHS paying £63 per 28 tablets of 20mcg
And new Roma capsules are cheaper at £55 for 5 microgram, £65 for 10 microgram; £55 for 20 microgram.
Vast majority of patients getting T3 on private prescription have 20mcg tablets of Thybon Henning T3. Price is currently 50-60p per tablet from specialist pharmacies in U.K.
Just read blog on Dio2 test. My mother suffered with Hypothyroidism for many years on Levo. It's possible I inherited the gene ....I have a GP appointment next week and will ask about having it done. I'm not holding my breath though. I can get it done privately if she tells me its above her pay grade. Do you know if Medichecks do it? I can check.!! Since been diagnosed Hypo my GP has sent me for tests all over.
Urgent referral last year for Myeloma screening.....negative thank God. This consultant told her to refer me to Endo in his report.
Next I was referred for colonoscopy fir suspect bowel cancer due to stomach bloat and bleed and chronic constipation. ......negative....thank God.
Referred Ear nose and throat specialist...I paid private. He wrote suggest to MRI and Endo. Not once has my GP suggested an Endo....I have had to initiate it. It's as if they wont look at the bleeding obvious thats staring them in the face. All the above problems only started after Hypo.
Hi. Thanks for info. One thing I'm confused with is that the Dio2 gene test is advertised on NHS as a test they do. I have seen this on Google. If the failing of levo is causing my symptoms which was prescribed to me by NHS doctors in my practice then surely under their oath they have a duty of care to the patient to rectify the disease. Everytime I go to Drs they say,"your bloods are normal" but I reply my symptoms are not. Its criminal what they are doing to us patients.....playing God....I'm sorry SD but I'm not the type of person to lie down and die knowing what is going on. If I have to pay privately for test I will. But I'm going for blood test next Monday and was thinking of emailing Dr and asking her to add the Dio2 test on ...and see what happens. It would be useful for my private Endo meeting on 5th August. Is the Dio2 result easily understood by the layman? Is it a clear yes you have it or not....its just I read on another blog that it was a complicated result
Also for a bloke your ferritin is low at 122 (30-400) - only 25% through range
Vitamin D needs to be at least over 80
Folate not brilliant either
What vitamin supplements are you currently taking
I have a private appointment with an Endo in August. According to Thyroid UK he has prescribed T3. He practices in a neighbouring CCG. So how will that work if he prescribes it.? Will my GP then have to supply it? Or will I have a battle. I dont really want to change GP as i have been at same over 60 years...
If you see an endocrinologist privately it doesn’t qualify you for T3 prescribed on NHS ….
Just seen this last post. Yes I have had testosterone done. It was fine. I am currently taking Vit D + k spray and Vit B 12 tablets . What would you recommend?My feet have started burning on soles of feet recently. Dr going to test Vit B next week
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
It will turn your urine bright yellow….that’s normal
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
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