Just been to my GP and left in tears and don’t know where to turn!
I’m hypothyroid have been diagnosed 16 years currently on 225 levo daily. In all this time I have never felt better! Went to Gp explained my symptoms main ones listed below
Chronic fatigue
Forgetfulness
Insomnia
Lack of bladder control
Irregular menstrual cycle
Complete lack of libido
Mood swings
Anxiety
Lacking motivation
Extreme sweating especially facial which can be very embarrassing
Severe night sweats
Extremely emotional when this is never usually the case.
GP practice have not checked my levels since November 2017 and did not feel a need to do so. I have had private bloods done using Medichecks. Happy to post latest results if anyone can offer advice?
I thought I may be peri-menopausal she said I am too young.
Her advice I am over medicated and should reduce from 225 down to 150 daily as my symptoms suggest I may be over medicated.
Can anyone advise me what to do next? I feel so alone with this and can’t understand what is happening to me and am really struggling to cope.
Written by
Craigmhor39
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Haven't read whole post through properly yet, but as far as I'm aware you cannot suddenly drop Levothyroxine by 75 mcg !
See another GP urgent or speak to practice manager. Ask for an urgent referal to an Endocrinologist.
You are well overdue your annual TFTS check but with symptoms ( I would hope) you should be investigated. GP would probably only be allowed to have TSH tested anyway.
Ask for full testing or referal or both.
How are your nutrients levels? Has GP ever tested?
What do you think is causing your symptoms?
What results do you have - could you post them with ranges and dates and your Nov 2017 if you have them.
ps
Just reading again and don't understand symptoms lIst as you also say that you ' . . have never felt better . . "
Sorry I feel I could have written that better. Since diagnosis and being treated I have never felt an improvement in how I felt since taking the medication symptoms remain the same as they were before diagnosis and some are worse.
Post your Medichecks ( and any other) results Craigmhor...you’ll get a good range of advice from forum members based on personal experience here! Was it this Gp that put you on the 225 mcg levo daily? You had folate, ferritin, B12 and vit D tested or know if you have Hashimoto’s antibodies?
•The recommendation on management of people who have persistent symptoms despite being treated with LT4 and with TSH levels within the reference range are based on the clinical guidelines The use of L-T4 + L-T3 in the treatment of hypothyroidism [Wiersinga et al, 2012] and Guidelines for the treatment of hypothyroidism [Jonklaas et al, 2014], the statements from the Royal College of Physicians The diagnosis and management of primary hypothyroidism [Royal College of Physicians, 2011] and the British Thyroid Association Management of primary hypothyroidism [Okosieme, 2015], and expert opinion in a review article [So et al, 2012].◦People taking appropriate LT4 treatment (TFTs within the reference range) who remain symptomatic should be further assessed to identify the cause — referral to secondary care may be required [Royal College of Physicians, 2011].
Once thyroxine replacement is initiated, for whatever indication, then long-term follow-up with at least an annual measurement of serum TSH is required to check compliance and dosage and take account of variations in dosage requirement caused by concomitant drug treatment (III,B)
Maybe see a different doctor.
Post your results so we can comment and maybe help further.
You are not overmedicated with these results. You can see that FT4 is safely in range and FT3 is also safely in range. However, you need more recent tests to find out what is happening. As you have autoimmune thyoid disease, results can fluctuate a little.
Unless you are very large or have had a total thyroidectomy then 225mcg of levothyroxine is quite a large dose although at the moment you clearly need it. It's very possible that you have an absorption problem caused by either coeliac disease, or gluten intollerance. Have you had these conditions ruled out?
Your active B12 is over-range, are you supplementing? If not, then a cause needs to be considered.
You have over range TPO antibodies which confirms autoimmune thyroid disease so it's very possible you have another coexisting autoimmune disease that could be causing absorption problems. Do you take other medication as some can also prevent good absorption of levvothyroxine.
You have no vitamin D test which is likely to be low with thyroid disease. Please return to a different GP in the practice, ask for vitamin D to be tested, ask for NHS B12 test to confirm it is over range if you are not supplementing and ask GP to find out the reasons, ask for test for coeliac disease although blood tests alone cannot rule it out. You also need ferritin testing as low ferritin or iron levels can cause some of the symptoms you describe.
Your bloods don’t indicate over treatment with levothyroxin.You could do with ferritin, and vit D results; in Oct.’18 your folate was lowish( should be at least halfway thru range) which may indicate you are not absorbing nutrients from food or supplements( a characteristic of Hashimoto’s). You need all 4 at optimum, not just in range( see Seasidesusie’s advice on supplements). You may need to add some T3 to get your FT3 raised to improve how you feel
Hi, sorry GP has upset you, clot. do you have any previous results from before the increase to 225mcg? How old are you? Or do you have any results from when you felt better?
It would help a lot if you could get a copy of your original diagnostic test results and post them here, you are legally entitled to ask for them. Sometimes problems are overlooked at that stage.....that happened to me and has only been discovered 20 years later!!
I never did well on T4 only and needed to add T3 (now T3-only) but before considering this you need to post test results here for advice and also ensure your vitB12, Vit D, folate and Ferritin levels are optimal.
You may not be adequately converting T4 to T3 and the unconverted T4 might be making you unwell.
Reducing from 225mcg to 150mcg is too big a drop at one time..
Have you ever taken a higher dose? Is there a different GP you could see? Symptoms of perimenopause can occur if hypo, but without knowing where in the range you like fT3 and fT4 to be for you to feel well, it’s difficult to know.
Did you take your meds on the day of your test (before the test)?
I think most people would suggest that you’re overtreated, but I’m not so sure, tsh can be very unreliable and if so you could be undertreated with space at top of T3 and T4 ranges. If it was me I’d increase slightly, and if I felt worse I’d know that was wrong and then reduce to 200mcg. However this is not advice for you to do this, as I’m not medically qualified. . Good luck, I hope you get a helpful answer.
I think it's time to see a T3 friendly endocrinologist and get small dose of T3 added on private prescription or perhaps, with luck on NHS prescription
Email Dionne at Thyroid Uk for list of recommended thyroid specialists
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft (who is now private consultant in Edinburgh) said in recent article saying, T3 may be necessary for many
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer 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. This is best option as you can see results back over long period of time
In reality many GP surgeries 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.
Sixteen years is a very long time to feel unwell. Why not take a private blood test, either Medicheck Ultra or Blue Horizon thyroid 11. Either of these will give you the results you require.
Take the test fasting, first thing and leave off Levo for 24 hours prior, then post the results with the ranges on here for answer.
This is exactly what I did after being ill on Levo and having my thyroid removed.
I now self medicate and feel well again. The money is well worth it.
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