My GP has told me after nearly 2 years that I have an under active thyroid and given me LEVOTHYROXINE 25mcg
Which I have been on for 2 months. I have now received this letter from my Rheumatologist that says different.
Should I still take LEVOTHYROXINE
Any advice please
🤔
hi.. if the gp diagnosed you 2 years ago, have you not had yearly blood tests?
I have had ongoing blood tests but GP only started me I. LEVOTHYROXINE 25mcg in June this year.. he said he didn’t want to Increase dosage even though LEVOTHYROXINE is not helping me... today received this letter from Rheumatologist and I’m totally confused as to whether I should continue LEVOTHYROXINE.. ?
Did the rheumatologist test your thyroid? If not, how does he know there's no other illness?
Do you have a copy of the results the prompted your doctor to give you levo? If not, you should ask for a print-out - it's your legal right to have one.
Hypo is often mis-diagnosed as fibro, but people diagnosed with fibro often go on to find that their fibro symptoms disappear when they're treated with thyroid hormone.
However, without seeing the results of your thyroid tests, with the ranges, no-one can advise you whether you should continue to take your levo or not. 
The Rheumatologist has written that "Thyroid tests from GP are normal" so I think firstly you need to clarify what those results were, by asking for a print out of the results and respective ranges, and also copies of the test results over the preceding 2 years. If you haven't already got them, ask at reception for copies to be printed off for you, and then post them here.
It's not clear from you writing "My GP has told me after nearly 2 years that I have an underactive thyroid" whether he diagnosed it 2 years ago and failed to tell you, or whether (more likely) you have been borderline during that period and hence successive monitoring tests, and have now moved into the overt stage and therefore being prescribed the Levo. If you monitor your blood test results yourself, which is very important to do, you have a fuller understanding of what's been happening with your health and what is going on now. So the first thing to do is to obtain the results from the receptionist if you haven't already, post them here, and folks can advise you more specifically. Without the numbers, any answer to your question "Should I still take Levothyroxine" would be pure guesswork.
Thank you Maisie gray 😊
11th june TSH 11.4 Free T4 8,8
TPO more than 1300
May 2019 Prolactin 45, normal range 59 to 619
I don’t understand this at all...
thank you for taking the time to message me 😊
Those were your last blood tests, on 25 mcg levo? And, your rheumatologist thinks they are 'normal'? Does he wear glasses? There is no way on this planet that a TSH of 11.4 is normal. You haven't put the range for the FT4 - I did ask you to put the ranges - but it looks awfully low. And, so it would be if your TSH is over 11.
I think your rheumatologist is insane. Don't listen to him, he's dangerous.
Your GP is also living on a different planet if he refuses to increase your levo with those results. 25 mcg is not even a starter dose. What reason does he give for not increasing?
Oh, and you have Hashi's. If that's not a thyroid problem then I'll eat my hat!
June TSH 11.4 Free T4 8,8
TPO more than 1300
May Prolactin 45, normal range 59 to 619
Your help is very much appreciated thank you 😊
Ladybex, this is unbelievably sad to read 😢 Even without the ranges for your TSH and FT4 test it is clear that you have Hashimotos with a TPO of 1300, high TSH and low FT4.
My god the incompetence of your GP and this ‘Rheumatologist’! It’s enraging that they are keeping you unwell. It’s been more than 2wks since you posted this, have you got an update?
See a different GP as soon as possible
TSH is ridiculously high. On Levothyroxine TSH should be under 2
Standard starter dose of Levothyroxine is 50mcg (unless over 50 years old)
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps (retesting levels 6-8 weeks after each dose increase)
Dose is increased upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
Very important to also test vitamin D, folate, ferritin and B12 too, especially as significantly under treated and left on wholly inadequate dose
Low B12 can cause night sweats
Joint pain low vitamin D
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
See different GP and request 25mcg dose increase in Levothyroxine to 50mcg and retesting in 6-8 weeks
Your thyroid antibodies are very high, this confirms causd of hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's
Low vitamin levels are extremely common with autoimmune thyroid disease
Have you had vitamin D levels tested?
You also need folate, B12 and ferritin levels tested
Plus coeliac blood test too
When getting thyroid levels retested after 6-8 weeks on 50mcg Levothyroxine ....Recommended on here that all
thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
Many people find Levothyroxine brands are not interchangeable.
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.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
I definitely think you have hashimotis and should really be trialed on at least 50mcg for 6 weeks before retesting, fibromyalgia is what you are told when they dont know as no blood test can confirm it, im not saying you dont have that but your thyroid is definitely not right, i got fed up with my gp who in the end i was offered antidepressant and 2 told i have fibromyalgia? I dont even fit the symptoms, i got second opinion, hashimotis will require thyroid meds for life.
I asked GP for increase in dosage as I was still unwell and he said to stay in 25mcg and get another blood test in 6 weeks.. I’m so tired and achey and still getting fevers .. I’m 65 so maybe that’s why I’m on low dosage 🤔
See different GP
This one is clueless
Yes, as you are over 50 years old you start on 25mcg Levothyroxine
But dose should increase slowly upwards.
Bloods should be retested 6-8 weeks after each dose increase
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as your high Thyroid antibodies confirms you have autoimmune thyroid disease also called Hashimoto's
Ask GP to test vitamin D, folate, ferritin and B12.
Or
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Thank you for all this info
😊
See GP and request 25mcg dose increase in Levothyroxine and vitamin and coeliac blood tests
Come back with new post once you get vitamin results and ranges
Assuming you get 25mcg dose increase in Levothyroxine, bloods need retesting 6-8 weeks later
Likely to need further increases
Saw GP told to stay on levothyroxine 25mcg and have blood test today ... also testing
Anti nuclear antibodies ANA (tPP) Calcium (tPP GP) Thyroid function TFT:TSH + fT4 (tPP) Creatine kinase CK (tPP GP) Rheumatoid factor RF (tPP)
Anyone know anything about this ??? I get more confused each time I see Dr ☹️
Come back with new post once you get results and ranges
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Essential to test vitamin D, folate, ferritin and B12
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
TSH needs to be about 1 or below ,FT4 and FT3 need to be at least in the upper half of the range.Always show the ranges as lab ranges differ.
I was 69 when diagnosed and started on 100mcg.
Tests should take place every 6-8 weeks and the levo adjusted if needed and you will need more I suspect.
I have had fibromyalgia for 16 yeas, I was told I had an under active thyroid 3 years ago. Your GP would of picked that up through blood tests. I would take the thyroxine, your only taking a small dose, I’m on 100mg.
He should re-take your blooods in 3 months to see if your levels have settled.
-deni- When test results are not optimised a wait of three months is far too long. It should be about six weeks between tests until results are optimised.
Will come back thank you 😊
Have just seen your results on the Fibro Forum and your TSH is still too high and the FT4 still too low in the range. Do you have the results for B12 - Folate - Ferritin - VitD ? You need an increase in dose of Levo. The Levo/T4 you are taking is a storage hormone doing little in the body. It needs to convert into the ACTIVE hormone T3 - needed in every cell of your body. It is the low T3 that can be the cause of symptoms - including Fibro. T3 rarely tested in the NHS - and yet it is the most important thyroid hormone. Yours will be low as you do not have enough T4 - hence you need am increase in dose to feel better. Sadly Docs fail to understand this.
I asked my GP about T3 and he said they don’t test ... I’m at my wits end ... I’m being told all normal and to stay on Levo 25mcg...
B12 folate ferritin - VitD came back normal
But I was told to take Ferrous-Aid 200mg and Calcichew D3 forte that after a month left me more bloated and more constipated so have stopped.
☹️
Are you able to have Private Testing done through Thyroid UK - click onto ABOUT TESTING in the link below ...
thyroiduk.co uk
Thousands use the service in order to have the correct testing done and to ensure their dose is correct. Special Offers with Medichecks on Thursdays are flagged up on the Forum.
You say your B12 etc came back 'normal' - do you know the actual result ? Doctors say normal when they mean in range - but it is where you are in the range that is SO important. Your levels need to be good for your thyroid hormones to work well in the body - both your own and the ones you take. So B12 is good at 500 plus - Folate and Ferritin mid-range - VitD at 100 approx.
You are legally entitled to have printed copies of YOUR results with ranges. Many surgeries should have on-line access so worth enquiring. You will need ID.
If you were told to take Calcichew then your VitD was LOW - also your Ferritin ( Stored Iron ) as you are taking Ferrous Aid. Eating liver once a week may help improve levels too. You need to know your VitD result as dosing is based on the result.
Make sure you obtain copies of all your results with ranges so you can monitor your OWN progress and check what has been missed. GP surgeries are governed by external bodies so we have to take control and monitor our own health - something I have had to do for the last 15 years in Crete as we had to keep ALL our own records - very grown up ! Now back in the UK - sigh !
25mcg is a dose that can do more harm than good as the pituitary slows down signally to the thyroid ..
Official diagnosis today
Different brand 
New hypothyroidism diagnosis 
different thyroid medications & acne 
