hello all Ian having tingling in my little fingers and pain in my right arm from that up to the elbow, that combined with muscle pain and tiredness with extra heavy irregular periods I went to my doctor last week she did blood tests which I thought would come back with menopause results however, she said it was hypothyroidism and put me on Levo thyroxine 50, I’ve been taking it now at 5am before my cuppa decaf but with milk at 9. Long winded but my question is I’m getting terrible headaches with a tired heavy feeling but the pain in my arm with the tingling and muscle pain is worse than before. How long till it works ? Is it normal to feel worse before feeling better? There’s so much info out there and the more I read the more scared I get. I’ve never been on any medication before and I’m scared I’ll never feel normal again. Sorry I know this is long winded but please any help will be most welcome?
alittle help pls: hello all Ian having tingling... - Thyroid UK
alittle help pls
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
It can take many months to feel significantly better with hypothyroidism. You start on 50mcgs and then have new blood tests in 6-8 weeks. Your dose should then be increased by 25mcgs and repeat bloods again in 6-8 weeks, repeat.
To feel well most people need their TSH at or below 1.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Ok thank you I know she tested for b12 at the time and that was ok.
ALWAYS get copies of actual results
B12 range is typically 200-760
GP would say B12 of 202 or 755 was fine
we advise keeping B12 at least over 500
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality some GP surgeries still do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
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)
Retest bloods 6-8 weeks after each dose change or brand change in levothyroxine
Which brand of levothyroxine have you started on?
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)
Thank you so much, it appears I’ll need to be a bit more questioning with my gp. The brand is accord!! Have you heard anything about that?
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets.
Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
March 2023 - Aristo now called Vencamil
healthunlocked.com/thyroidu...
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Discussed here too
healthunlocked.com/thyroidu...
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
markvanderpump.co.uk/blog/p...
markvanderpump.co.uk/blog/p...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Slow dragon has explained re. Vitamin B12 and agree wholeheartedly. I would be very surprised if your B12 is anywhere near the 500 she is highlighting to you as wise to regard as a minimum requirement. Your folate is also likely not at near the top of the folate range, and likely much too low. Vitamin B12 and folate work together. The tingling in your fingers and problem with your right arm , I suspect is likely to be Vit B12 and folate related. Your thyroid also appreciates optimum levels of both to function well.
Hi, just reading through your reply.I can access my blood results via the NHS app.
Many thanks
To feel well most people need their TSH at or below 1.
Is this information that has been gleaned from members’ posts or is there a source / reference for this?
There is a Toft video posted by SeasideSusie often that states this, can't find it at the moment. He also states in some of his papers that some patients need TSH lower to feel well.
rcpe.ac.uk/sites/default/fi...
Members of this group would also concur with having a lower TSH also.
Yes. ‘Lower’ I understand but I just wondered about the reference to ‘at or below 1’
Here's the Toft paper from 2017. It's a while since I read it, so not sure of his exact phrasing. tpauk.com/main/wp-content/u...
Thank you 🙂
There’s at least 2 million people in uk on levothyroxine
Most of them are not on any forum, as they are recovered and getting on with their lives
It typically takes a few months to get dose levothyroxine slowly increased up to dose you eventually need
If you have high thyroid antibodies (hashimoto’s) GP should do coeliac blood test too
Can't offer any advise, just to sympathise. Also newly diagnosed; went to GP because of extreme joint pain and weakness. Just increased my dose to 100 mcg and my knees and hips feel so much worse. However, everyone says it takes time to adjust, so trying to bear with it and wait until my next blood test. I find movement really helps, just going for a walk and keeping the joints moving. Also bought a stationary bike to use at home when the weather is too bad. Gentle movement to get the circulation going and nurture the joints. Lets hope the effects of the thyroxine kicks in soon. Good luck.
Have you had your heart checked, catherfixation
I did have a very similar symptom with tingling and pain in my hands, fingers and forearms several years ago. It went away on it's own when I lost weight. I was taking levothyroxine at the time which didn't make any difference with that particular symptom. Your situation could be completely different to mine though. I hope that you find improvement soon, <3
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