I’ve not posted for a while now though I do read all daily posts on the forum and have gained a better knowledge of complications as a result . However I have now almost reached the end of my tether after three years of debilitating pins and needle sensations over the entirety of my head , stiffness and pain in neck and shoulders, and persistent muzzy head ,and ear pain , All this following a trip and fall accident resulting in a broken nose injury The G P. s admitted they didn’t have an answer ! so I joined Thyroid U.K. in June 2020 as thyroid damage seemed a likely reason I figured . I did have an MRI scan but this did not happen until two years had elapsed ! This revealed damage to the top two vertebrae of my spine, diagnosed as arthritis! I am currently on 50 mg of Levothyroxine , and feeling dreadful.
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Thank you for your message , please except my sincere apologies for not getting back to you, this brain fog befuddled head makes corresponding very hard for me to cope with I don’t have any recent blood test results other than TSH only ,which was done in November 4 months ago result = serumTSH level (XaELV) - 2.04mlU/L. (0.27-.42) T 4 was not even on the nurses instructions( from G P )at blood draw !
Most members report feeling best with a TSH around 1, so likely you will feel better with a dose increase. We recommend testing FT3 and FT4 for a better picture of your thyroid health.
Most GPS and even some endocrinologists don’t routinely test FT3 and some only test FT4 if TSH is not in range. That’s why so many forum members test privately for TSH, FT3, FT4, thyroid antibodies and key vitamins (ferritin, folate, vitamins D and B12). Many members use Medichecks or Blue Horizon.
Hi Buddy , Thank you for getting back to me , and please forgive me for delay in replying , I’ve been feeling so anxious and cold all the time with this unrelenting, debilitating pins and needles for so long that I can’t seem. to keep up with correspondence any more,sorry! The last private blood test I managed to get done was a Medichecks finger prick test in November 2020. This was supposedly a finger prick test but when the test kit arrived it needed slightly more than I’d anticipated.It took ages and three lancets to obtain the amount of blood requested . by which time the blood was kind of thickening in the tube and I thought it would be rejected .However it wasn’t and I posted the results on the forum .
Since then I have made repeated requests for tests at the GP surgery but advised T4 was only tested once a year , T3 not at all , and only TSH in between times .They refused to increase my Levothyroxine as last blood had shown high T4 and low TSH so I’m on 50 mg to this day and feeling really dreadful, so cold all the time , no energy , exceedingly dry skin all over body , crusty dry patchy areas of skin on upper half of face including my nose , both feet red and swollen with white patches and always cold, gut issues , and constipation , I could go on!
I would ask your GP for a print out of your blood test results and share them as a new post. When did you last check key thyroid vitamins (ferritin, folate, b12 and vit D)?
GPS often reluctant/ unable to test FT3 and FT4 if TSH is within range, that’s why so many members test privately.
Hi Buddy , I’ve been attempting to get TSH , FT4,plus FT3 ,private NHS, test which I understand is available at Exeter Hospital at reduced price with Thyroid U.K. discount code . I enquired at my local GP surgery reception and was advised to contact Exeter ,which I did but was told I would have to contact my local hospital regarding blood draw as not available from Exeter. I followed their instructions only to be told I’d been given wrong information . Now I’m confused , nobody seems to be able to advise me ! If I can’t get a blood draw from my local surgery( even though I’ve offered to pay) So! don’t know what to do now , I had assumed that as test would involve a trip to Exeter this would include the blood draw (even if additional cost was involved - But apparently No!
After a bit of practice I’ve been able to master a finger blood draw, but understand others find this very tricky. I know Medichecks have a list of options for venous draws, but I’ve no knowledge of services in your local area.
Thank you for responding back to me so quickly , I’m at my wits end now , and have thought for a long time that T4 to T3 conversion is part ,if not the main problem here I’ve had hypothyroidism for a very long time but since Whiplash injury over 3 years ago now things have gone from bad to worse. Levothyroxine I think maybe not getting into my cells could this explain high T4 low TSH perhaps ? or pituitary hypothalamus gland issue perhaps ?
We need to see recent copies of tests for TSH, FT3 and FT4 to advise on your conversion. Also key vitamins, as having these optimal will support your thyroid health. The vast majority of members here do well on Levothyroxine alone, if the dose (like the key vitamins) is optimal.
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health: thyroiduk.org/help-and-supp...
If your GP continues to dose by TSH, without regard for FT4 and FT3, plus the continuation of hypothyroid symptoms, I would seriously consider changing GPs /practices.
I’ve spent most of the day trying to source local blood draw and have found a health clinic (in a town 20miles away )who do private blood draw but usually it gets sent to a laboratory direct - but I don’t think it’s Exeter Hospital . Receptionist was very helpful and is going to ring me here tomorrow regarding costs etc. should I risk this on the assumption it’s a reliable test for Free T4 , Free T3 , plus TSH, ?key vitamins can be done also but at additional cost apparently . Hopefully if all this goes according to plan I will then have some results to post on the forum 🤞I am also looking into adrenal stress test from Genova Diagnostics which I can obtain through Thyroid U.K. in place of practitioner. I perhaps 🤔 see light at the end of the tunnel now 🤞thank you for your help and advice
Poor you—it sounds like you’ve had a horrible time.
The thing is, 50mcg levothyroxine is usually a starter dose. And being left on too little levothyroxine over a long period of time often leads to poor gut absorption, which leads to deficiencies in key vitamins and minerals and all sorts of other miserable effects.
As Buddy195 says, have you got any recent blood test results? If it’s been a while since you had any, I’d definitely visit the GP to ask for some to be done.
hi JA22W apologies for taking so long to get back to you and thank you for your kind message. I requested a cortisol test before Christmas but after months of waiting for an appointment for this I was told it would not be happening after all , so now have to look into getting private saliva test from Genova diagnostics which I had done before some years ago arranged by Martin Budd at the time and the results were sent to him - I think this is the way it works( ie -test has to be ordered through practicioner) G.P here is not at all helpful .
hello. I’m a great fan of chiropractors although it can be hard to find a good one. I’d recommend asking around and going in that direction. It sounds as if something has been jarred and nerves are caught somewhere. They’re good at fixing that sort of thing especially around the neck.
Hi, I looked back at some of your previous posts 2 years ago and you were in dire need of an increase then, has your GP not moved you up from the starter dose in all this time?
Thank you Eeyore 100, for your message - Yes sadly I am still on starter dose of Levothyroxine, I did put in a request for an increase this. was. back in May last year , but was refused as my TSH indicated I was over medicated - so would have to be reviewed in 6 months time . I then, in November ,at the allotted time !received an appointment at the surgery for a blood test This turned out to be-TSH only( ,which I questioned with the nurse “ what about T4?” To which she replied “ apparently not!” Result came back as -Serum TSH level(XaELV) -2.04mlU/L(0.27-4.2) - Clinical details repeat 6 monthly . This apparently was the entirety of the 6 month review ! !!
Get yourself FULL thyroid and vitamin testing via Medichecks or Blue Horizon
They both offer private blood draw at local to you clinic or nurse to your home
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
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 and last dose levothyroxine 24 hours before 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
List of private testing options and money off codes
Did you get full thyroid and vitamin blood test done yet
50mcg is only the standard starter dose of levothyroxine
Approximately how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
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