I’ve posted recently about thyroid and menopause and how one effects the other. After feeling increasingly unwell and with more and more symptoms I rang the doctors and insisted that they check my thyroid levels again. I’ve been told recently that they now recommend testing only every one to two years. Had to argue with two receptionists and two separate doctors before they would agree to the test. I’ve been taking 50mcg thyroxine pretty much since they diagnosed me in January 2017. Just received a text from my doctor saying that my TSH levels have gone up so they are increasing my dose of levothyroxine to 75mcg and to re test in two months. I’m pretty horrified by the fact that on my last doctors appointment about six weeks ago when I had a complete emotional meltdown in the surgery I was only offered anti depressants, CBT therapy and the advise that “I am allowed to feel like this”. No offer or suggestion of checking my thyroid despite them knowing that I have this condition. Just been to collect my prescription and asked for a print off of my blood results. All that it says in the print off is that my TSH is now at 8, no mention of anything else so I’m assuming that they only tested for the bare minimum of things as I had to push for this test in the first place. I feel that because I’m menopausal every symptom is just put down to that. What are people’s thoughts.
Misdiagnosed as menopause symptoms: I’ve posted... - Thyroid UK
Misdiagnosed as menopause symptoms
So you have been very poorly treated
Thyroid levels should be retested regularly in first year, or so. 50mcg Levothyroxine is only a starter dose.
Just testing TSH is completely inadequate
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...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
NICE guidelines
cks.nice.org.uk/hypothyroid...
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
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.
If you wish to avoid Teva taking 50mcg plus 25mcg or 50mcg plus half 50mcg tablet
No other medication at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
as you have been left on extremely inadequate dose for so long low vitamin levels are likely
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Thyroid levels 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 before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
monitormyhealth.org.uk/thyr...
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
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
You’ve pretty much confirmed what I thought. It’s like banging your head against a brick wall. I did pay for a private blood test through blue horizon this time last year and posted the results on here. Yes since joining this forum I always follow the recommendation of only drinking water from early evening the night before blood test and withholding medication till after my blood test. I guessed when I went fir the blood test that they’d only test for the bare minimum as I had to fight so hard to even get the test. It’s so hard to fight your corner when you’re feeling so low and still struggling to understand it myself. Seems that once you have one condition such as menopause then you’re not allowed another and they look no further. Will get through Christmas and then pay for a private test again. I went this time last year armed with a print off of all my private blood tests and information that I had gained from here but the doctor poo pah’d pretty much everything. His parting words to me were that people go to them expecting them to have all the answers and that unfortunately they don’t know everything. I was completely flabbergasted and was thinking we’ll surely you should send me to someone that does have the answers. Surely this is why you have endocrinologists. Felt so stupid when I left and annoyed that i hadn’t voiced this to me but I just feel exhausted and have started to feel like a hypochondriac.
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists in case you need to go over GP's head
thyroiduk.org.uk/tuk/About_...
Likely to need further increase in Levothyroxine
Ok thanks. Will do that.
What a rotten time you have had, let's hope that in future your GP will be more understanding and listen to you.
It' s all too common to have difficulties with doctors. A good doctor is worth his weight in gold, the rest are only interested in the gold. If they were paid by results they'd be paupers.
Medication for the thyroid assuming that is the problem Dr Berg at Youtube produces four
excellent videos on the thyroid. You could start with 'How to Get Your Thyroid to Work Correctly'. He goes into details your average doctor hasn't a clue about.
Welcome to the club .... 12 years ago when I was 48 years of age I walked into the Doctors telling him about my hair loss, unpredictable heavy periods and feeling depressed. I was sent for a uterus biopsy that came back normal so a mirena coil was inserted and then began my 12 years of hell. After 15 months I begged them to remove the coil because of hair loss and weight gain and continious spotting they did and noticed I had a inflamed cervix so back to the hospital for another uterus biopsy and now a cervix biopsy all came back normal. Then I had 6 months of no periods and I felt great only to suddenly have a very heavy bleed so back for another uterus biopsy which was also normal. Then I started to lose hair and my nails started to lift off their beds so I googled and saw that was the symptoms of thyroid disease but no my blood results were normal says my Doctor so I was given hormone patches which I did not use because my mother died of breast cancer. I eventually asked for a print out of my blood results which I put on a support site for thyroid disease in the US and the members told me my TSH was supressed at 0.002 and my vitamin D was 7! and my ferritin was also low. I had paid £150 to see a Dermatologist and they had said my thyroid results were normal and it was the menopause or female pattern balding and told me to use Regain. Back to my doctors and I saw a different Gp who spotted I had a goitre and referred me to a Endocrinologist who was supposed to be an expert he overdoses me on PTU so my TSH was 9. When I break down at his clinic and tell him I feel ill he tells me I need counselling! I walked out never to return to his Clinic. I then pay to see Dr Skinner in Birmingham who instructs my GP to give me Levothyroxine I take it for a few months and suddenly I feel better so I stop and then I go into remission for 4 years. Then I have a relapse and I am bedridden and go to my Gp to ask for Levothyroxine again because I feel under active he refuses even though my antibodies are 4000 and my T4 and T3 are low because my TSH is 0.95. I then get Thryoid S from Thailand and take it for 6 months until I am on 1 1/2 grains but then I start to feel over active so I stop. That was last year this year I was admitted to hospital with a suspected heart attack after becoming unwell at a wedding. They do tests and tell me my TSH is 0.54 and normal they don't test the T4 or T3 which I believe was high. My TSH is now 0.70 and I am in remission now and feel great except for not being able to sleep much.
This is my Graves' Disease journey and it has been hell on earth .... but I do realise there are people who are in worst position than I am and until the NHS stops going by just the TSH and looks at the T4 and T3 levels we shall continue to suffer.
Oh my goodness I’m so sorry that you’ve suffered so badly for so long. Makes what I’m going through seem like nothing in comparison. The treatment we receive in this country and the lack of knowledge and care is disgraceful. I hope that things start to improve for you. X
Thanks ... I notice you have high Ferritin on your previous results, mine is 300 and over range because of inflamation and my CRP is over 9 and has been slowly rising for years and I cannot lower it. I think it is because my thyroid is inflamed and I have high antibodies.
I took the copy of my private blood results to my GP last year and he dismissed everything dnd passed no comment on my high Ferritin or anything else. I’m still trying to understand what all of this means.
Doctors have no idea about thyroid disease in the UK I have had to do my own blood tests and buy my own drugs from abroad. There is Graves' Disease written on my medical notes as well as delusional when I kept pestering them because I felt so ill. The way we are treated by the medical profession in this country is disgusting! I have been made to feel like an overweight balding neurotic middle aged woman and offered counseling twice and antidepressants for my illness.
Also my doctor said if my Ferritin goes over 800 I will have to give blood because it can damage my organs .. so keep an eye on yours.
I will do, thanks for the heads up. I like you was starting to feel like a hypochondriac and had anti depressants thrust on me several times now and yes the counselling. I’m so glad that I didn’t go down that route again and instead insisted on a thyroid blood test, even if they did only test for the bare minimum.
Laughable isn't it! What would I have talked about to the counsellor? I would have said I am losing hundreds of hairs a day so I have hair extension put it in at Lucinda Ellery so I look ok, my nails are lifting off my nail beds, I have blurred vision, my skin is dry and my eyes are dry, I have no sex drive and cannot get out of bed in the morning and spend all day watching tv because I don't have the energy to do anything else etc etc... I think the counsellor would be as bored as my Doctors have been when I tell them all my symptoms ....
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