Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: renee on June 08, 2018, 05:30:42 PM
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Hi Ladies,
Im so upset just now and cant seem to speak to my hubby or family without crying! Had a bad few years with meno, thyroid and just a month ago I was diagnosed with Fibromyalgia!! ☹
I know these conditions arent life threatening but they have changed my wee life. I kinda can cope with the thyroid and meno situation but the fibro diagnosis is unbelievable. To live with this is not real, it cant be!
Im totally struggling how to once again re-balance my life, I had a super job which I had to give up 4 years ago due to illness then my beautiful grandchildren came along, which sort of made up for the end of my career in my late 40's. Now I cant lift my grandchildren or a kettle or squeeze out my shampoo in the shower! How do I live like this ☹
Im waiting for my rheumatology app, Im hoping I can get advice and help with this. My doctor said that my thyroid is related to my meno being quiet bad, now its my fibro being related to my thyroid being off sink again.
Any advice on how to live with no energy, flu like fatigue, pain and just alot of tears and disbelief that Im not going to be able to battle through this one 😪😪
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All of what you are describing could be due to low oestrogen. Are you taking hrt?
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Your thyroid could well need optimising. Never just accept "it's fine" or "in range". The aim of thyroid replacement is to have a TSH of 1 or below. And Free T4 and Free T3 in the upper part of the reference ranges. BUT GP's are pretty hopeless with thyroid. So are many endocrinologists. You really need to learn about thyroid. Your fibro. diagnosis could be attributable to low thyroid or low Free T3 in particular.
Healthunlocked.com is full of really useful information on thyroid and the forum, like this one, is a wonder for patients. Don't give up. Start really learning about thyroid. It controls so much. It's so important.
And also, as the poster above said, HRT. You may need HRT to help.
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Thanks for your advice ladies
Im on thyroxine and was last checked in Jan and the reading was normal after changing my mcg by half. Iv asked for another blood test but the doc said my symptoms are down to fibro as iv had a few crashes over the past 2 years with the same symptoms. Im on Tibolone and have been for over a year.
I have a doc app again on Tuesday and will request more bloods. Had a lupus and arthritis check, iron levels etc but their all ok x
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Never accept "normal" thyroid results from a GP. Always ask for copies (you are entitled to them) and keep them to refer back to.
Most of us with thyroid issues have to run our own tests privately to get the full panel we need, which is TSH, FT3, FT4. You rarely get a FT4 result out of the NHS and these days you have to pay with unicorn poo to get a FT3 test result!
I think you might find Healthunlocked helpful. Some excellent advice on there for optimising nutrients and hormones to be optimally treated. You doctor might have it the wrong way around. The thyroid might be causing the fibro. You have to become your own doctor with these things.
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Hello renee.
I'm so sorry that you are upset but please don't despair.
You have had some great advice already but you may want to also research anti inflammatory foods to treat fibromyalgia. Take a look at Dr Greger's NutritionFacts.org. site as there is a lot of science explaining the benefits of changing your diet.
I'm sure you'll find lots of information that can help you plus you will be able to challenge your doctors with relevant questions.
Hopefully you will discover that the future isn't as bleak as you fear.
Wishing you well and sending hugs.
K.
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Thanks ladies,
I will definetly ask my Doc on Tuesday about more thyroid testing, and about T3 etc. I will also look Healthunlocked website tomorrow.
I have expressed my concerns twice to my doc regarding my thyroid meds being halved and they way I feel could be a result of this but she was adamant that my levels were normal and stable now and that the pressure point test and all my other symptoms were related to fibro ☹
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If you are still getting symptoms then although the readings may be 'normal', something ain't right so you need to see an endogronogist? [sp}
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CLKD I will get some answers on Tuesday....Im not accepting this is fibro! ☹
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Take a list of symptoms that are under 'control' as well as the new ones? Have you had a recent virus?
If it's fibro getting appropriate advice will allow you to engage your other problems so that you body unites better than it is presently. It doesn't take much to throw us out of kilter!
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CLKD....I had the flu then a viral infection at the beginning of the year. ThenI lost my beautiful mother in law, so this year didn't start well for us 😒
Iv written down how I'm feeling onto my notebook in my phone. Speaking on here to you lovely ladies has given me the courage to push my thyroid situation with my doctor a bit further. I was on 100mcg of thyroxine for years with no problems but last year my readings went off so hence the reduction of thyroxine.
I'm currently sitting with my hot water bottle trying to heat myself up as I'm also cold a lot 😞
So appreciate all your advice, my thought process feels a bit more lucid 😍
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Isn't feeling cold a sign of thyroid problems ? :-\
Thyroid problems can really thrown the body out of kilter ..........
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Bless you, Renee! If you're feeling cold a lot, it definitely smacks of thyroid! You need an evaluation before they slap a Fibro. label on you (Dr Vliet in her book 'Screaming To Be Heard' talks extensively about how Fibro. is predominantly diagnosed in women and the symptoms are pretty much the same as hormonal imbalance - including the so called 'fibro fog' and the brain fog of estrogen depletion. This woman is a marvel)! xxxx
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Hi Renee
I'm new here. My heart goes out to you and I'm sending you a big gentle virtual hug. I've gone opposite way from you fibro was 1st diagnosis Jan 2016 although I've not seen a rheumatologist, then thyriod goiitre, waiting for endocrinologist appointment on 19 June and now gp thinks perimenapause too. It is horrible, isolating and terrifying to have your quality of life ripped from under your feet. If it is fibro as well it does improve over time, mine did (i struggled walking from my livingroom into my kitchen) although I've never been pain free and fatigue still gets me but it becomes manageable. As for fibro and thyroid it could be you are a bad converter of t4 into t3 so should get your t3 levels checked as well as vitamin d. The thyroid UK site is a wealth of info and please read the article by a dr Lowe on fibro and conversion of t4 and t3. I think it's on the associated condition part.
I so hope you feel better soon.xx
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Hello again ladies.
Just wanted to add that my GP said it wasn't necessary to test t3 if all other levels are within range, also it costs the surgery fifty pounds every time so they don't offer the test!
Take care all and goodnight.
K.
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Renee I am so sorry to hear about this and I agree with you and the others - do not accept this diagnosis of fibromyalgia - once you have been given this then you have been fobbed off!!! Fibromyalgia itself is not a disease but is a syndrome ie fibromyalgia syndrome is its proper name. As such it is a set of specific symptoms for which a cause has not been identified ( or maybe not investigated...)
Most of the causes if properly identified and investigated would probably turn out to be hormonal. As SueLW says the most usual one is thryoid malfuntion - underactive, with others being very low testosterone, and also low oestrogen as a result of menopause may also cause some symptoms.
I am horrfied that your doc, knowing you have an underactive thyroid and have ongoing symptoms (notably feeling cold - and presumably others too - fatigued, pain, ?weight gain maybe) - should consider giving you this diagnosis. Also that she is not going by symptoms - just looking at the lab levels.(I know very little about thryoid). Do follow what Loki and SueLW say - it is extremely complex and there can be several different problems all the way down the line re TSH, T4 and T3 as well as pituitary problems, and Hashimoto's ( antibodies) all of which can give rise to symptoms. I think they are all listed on thyroid UK. It is absolutely imperative that you are referred to an endocrinologist to look at your hormones in full and not go down the route of fibromyalgia (yet...).
I had a lot of aches and pains - muscle pain after exercise, and un-natural fatigue also after exercise (coupled with zero libido) and my GP was going to refer me to rheumatologist for fibromyalgia ( after first suggesting it was my age and that she got aches and pains when she had been riding her horse now she was older!!!!). When I suggested testing for low testosterone - she said we can't go round testing all women for testosterone who complain of tiredness. Needless to say I went for a private consutlation (it was before the NICE Guidelines came out) and testosterone "cured" my possible fibromyalgia - at least the symptoms that I went to the doc about.
I'm just telling you that to illustrate another example of a GP attempting to fob a woman off and consign her (me) to years of misery with a "there there"!!!
In addition - you say you started to take Tibolone a year ago and that was when your levels went up the creek? I just had a look at the product info (SPC) for Tibolone on the web and it has this to say:
"Treatment with Livial results in a very minor decrease of thyroid binding globulin (TBG) and total T4. Levels of total T3 are unaltered. Livial decreases the level of sex-hormone-binding globulin (SHBG), whereas the levels of corticoid binding globulin (CBG) and circulating cortisol are unaffected."
Coiuld this be an explanation? The hormone they were testing for could have altered and as a result your medication reduced which has now put you out of whack completely, unnecessarily.
I would take your morning temperature for however long you need to, and go back to the doc with your symptoms irrespective of blood readings and as well as ask for a referral - as in interim ask to increase your medication back to where it was. Which was the reading that was wrong anyway and how far out was it?
Bit of a long post and ramble this. but this just makes me livid to hear a doc with such a narrow view....
By the way are you generally happy on the Tibolone or do you feel you need a higher dose of oestrogen? It does sound more like the thyroid though from what you say.
Good luck with your doc visits and referrals (fingers crossed) and please let us know the outcome (hopefully positive! :))
Hurdity x
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Hello ladies, Im so very grateful for your wise advice. Im writing it all down on my phone and will give it a good shot when I get to my app on Tuesday. Im going to demand a more detailed thyroid blood test!
Also, I will.explain the advice I had from here and the possible interaction between Tibolone and thyroid readings.
I slept for 7 hours last night, woke up feeling a bit more refreshed but by 1pm I felt the fatigue, nauseau, cold creeping over me and by 3pm I just had to put my head down, I had no choice! Feels like my mind is alert but my body has crashed.
Im still in my bed, and this is very unlike me. Very weepy today. I feel like stopping Tibolone and phoning my surgery on Monday morning to demand an app on that day but then feel its not an emergency, even though I feel absolutely rotten ☹
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Oh dear Renee!
You're cold and tired and weepy. Of course it's your thyroid! What these doctors think they are doing beats me.
You were on 100 Levo (I think you said 100) and OK and then suddenly your doctor decides to lower it! Why? What reading was causing her alarm?
You are entitled to copies of your test results. On Monday I would ring the surgery and ask for a copy of your last thyroid blood test results and either go and pick it up or get it over the phone, but either way make sure they give you the reference ranges with the results. Useless without. I bet you only get a TSH result. If you are lucky you might get Free T4 as well. You won't have a Free T3.
If you get the results, come back and share them.
You will have to work hard with your GP to get a T3 test. But you could swing it by going in well prepared and giving her the low down on your case.
- You didn't have fibro symptoms when you were on your original Levo dose (I assume you didn't).
- You felt well and active on the original dose (I assume you did).
- Your dose has been reduced and now you are tired, upset, weepy, falling asleep and COLD, with aches and pains etc.
The aim of a hypothyroid person on Levothyroxine is to have a TSH of 1 or below. Not 1.9, or 2.8 or whatever else falls in the reference range. 1 or below. Your Free T4 result is pretty much useless without a Free T3 because you can't see if your body is converting the T4 to T3 without the result. Your Free T3 needs to be in the top third or top quarter of the reference range and sometimes, to get it there, your Free T4 will need to be slightly over range. But you need the test to find out.
Hurdity mentions getting a referral to an endochrinologist. Sadly, many of them are as clueless of thyroid treatment as GP's seem to be. So that's not necessarily the Holy Grail. The thing you most need is your dose of medication raising back up (25mcg a time and retest in 6-8 weeks and then if necessary another 25mcg raise and retest in 6-8 weeks etc.). Doses should only ever be adjusted by 25mcg a time, either up or down, and always retested in 6-8 weeks to check what impact has been had.
Good luck with asking for the tests. If she won't do it, you are going to have to do it yourself and Thyroid UK and HealthUnlocked will be invaluable to you then. But for now, go in assuming you will get what you ask for. And don't be afraid to say that you want your TSH to be 1 or below to see if your "fibro" symptoms go away.
I recommend you watch the following video about hypothyroidism. Dr Renee is very competent. She also has no thyroid of her own, having lost hers to cancer a long time ago. She's not hide bound by the TSH or by Levothyroxine alone. I've met her. She's quite sweet in the video, but actually she's a powerhouse and very quick to notice things. I felt in safe hands and indeed she almost immediately found something in my past test results that should have been followed up 2 years ago and was ignored so now I'm investigating that tack. You might get a bit more confidence from her ready for Tuesday.
https://www.youtube.com/watch?v=QJqWKwIriRs
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Oh sorry renee - Feel awful for you having this diagnosed hope you get some relief/remission soon :-\
I was just wondering whether to start a thread myself as I may be following in your footsteps. It is sad to hear your news - but I hope you won't be offended if I say I have found it reassuring to know other people are going through the same thing.
My initial potential diagnosis is CFS but the dominate symptom now is pain so not sure what the doctors will say.
Before settling on CFS as a diagnosis I have had to eliminate other options including stabilising my Oestrogen, addressing low Vitamin D and B12 symptoms- and now I'm down to pretty much three symptoms of pain, fatigue and sleep problems along with other symptoms thrown in depending on how the day goes.
I have found Magnesium supplements helpful with the pain though, so that might be worth a try,
Hope you get on OK at the doctors and feel supported with your queries :bighug:
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Hi Ladies....its 5am and Iv been awake since 3.30. Pain all over and muscle fatigue. Your lovely messages are so helpful to me, I really cant thank you all enough. Im sad that some of you are also going through similiar symptoms and I too hope you get help and relief with these.
For the past 3 years Iv crashed a few times, usually after any stressful situations or too much physical exertion. These crashes would be months, even a year apart.
My TSH spiked end of last year to 24 which caused them to half my dose. Iv been back and forth to my doctor since them complaining of my symptoms, then reluctantly in Feb I was allowed to increase my dose to 75mcg every second day! I did request a thyroid check last month but was refused. Over the years I have also had bouts of anaemia and put on iron tabs for 3 months at a time. I am wondering if the Tibolone has upset my thyroid but to say Im confused is an understatement.
I feel Iv struggled on for months and had terrible fatigue but also insomnia. The muscle weakness is actually painful but then so is my joints. Iv had my B12 checked and full blood count etc. Think thats why my doc has diagnosed Fibro as Iv also had checks for Lupus and arthritis.
Iv also had a burning tongue since a week before Christmas. Iv had a scraping done which came back clear. Doc said its called burning mouth syndrome.
Thanks again for listening to me, Im a bit frustrated with my hubby as he just looks at me like Iv got 2 heads and Im now snapping at him. ☹
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This can't be right. You said your TSH spiked to 24 at the end of last year and so your doctor halved your dose!!!!
Are you absolutely sure the TSH was 24? If it was, and he halved your dose you absolutely must get yourself a different doctor! If that TSH really was 24 and your dose was reduced then your doctor has NO IDEA how to treat hypothyroidism. He's trying to kill you instead. Your TSH should be 1 or below and the only way to do that is to increase your Levothyroxine until it reaches the target. The doctor is going the WRONG WAY.
Are there other doctors at your practice? If so, book an urgent appointment with one of those. If not, find the nearest next practice and register to move. You can't stay with a GP who thinks the way to treat a high TSH is to lower the dose.
Your symptoms are so very hypothyroid. Go to the Thyroid UK web site, search for the Symptoms List, print it out and tick the boxes. Take that with you to your appointment.
Dr Renee, who I linked for you, told me that if her TSH was 10.3 (like mine at the time) she would be unable to function, unable to work. Yours was over double that and you had your medicine reduced. I'm spitting feathers here. Still ring the surgery tomorrow and ask for a copy of that blood test at the end of last year. There might be a chance that you misheard or misremembered and the TSH was actually 2.4. Still room for another increase though, not a reduction.
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Hi SueLW....Im sure it was the TSH. Maybe Iv gotten it wrong but one of the readings had spiked to 24. I will ask for a print off tomorrow. I want to know before, during and after starting Tibolone too.
The next reading was 15 so he said its coming down to a safer range....I remember him saying that.
Ill defo find out tomorrow. Sorry to alarm you and thank you so much for caring. Im in tears at the moment and taking on board all of the advice which is written into my phone. My hubby is coming with me to pick up on the readings too as I trully dont understand them.
Sending you a huge hug SueLW💞
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I am suspecting now, from what you have said, that it's not your TSH that hit 24 but your Free T4. But remember, when you ask for the print out, you need the reference range with the result. All labs are different so we need to know. I suspect your Free T4 went over the top of the range and he panicked. No need, but without a Free T3 result he should have been more careful of the reduction. And he should have retested you after 6-8 weeks and adjusted again if it were dropping too low.
You are probably going to have to pay for a private thyroid blood test to get proper answers on your situation. But it's not that expensive and people on HealthUnlocked and Thyroid UK will help you by telling you which test to go for, where to buy it from and how to interpret the results so that you can decide what to do next.
There is a woeful lack of understanding of hypothyroidism in the UK at the moment. 50 years ago there were no blood tests for it. Doctors diagnosed from symptoms and sometimes by testing for cholesterol and finding it high. Then they simply gave the patient replacement hormone until the point they actually felt well again. Then someone invented a blood test and now they only treat the results of the test, which can be very inaccurate for some patients.
Don't be down about this. You are at the start of learning to take your own health into your own hands. You need to know more than the doctors about hypoththyroidism, and if you are not converting T4 to T3 very well, you will have to self-treat, but thousands do that successfully with the help of support groups.
Good luck. Get your husband on side to help with the research because if you are suffering symptoms your brain probably isn't working very well right now.
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Just to say it's great that you can and do give your expert and knowledgeable input over thyroid treatment on this forum SueLW, as it is such a complex (and as you say under/badly treated) issue and there seems to be a lot of cross-over with menopause and women becoming hypothyroid at a similar time to becoming peri-menopausal, not to mention being diagnosed with fibromyalgia, CFS, ME and all that these entail. I have a friend with Hasimoto's and is a poor T4 to T3 converter and also has fibromyalgia - entirely caused by the Hashimito's. Her (the same as mine) GP practice do not recognise that she has the condition due to her lab results and the dreaded ref ranges so she has to go privately and obtain the armour thyroid. I would say - that this seems to be much worse in terms of understanding and treatment, even than menopause??
Renee you mentioned a while back about stopping Tibolone due to what I posted but my intention was just to show that there is some relation between them and your lab results may have changed as a result ( or they might have had nothing to do with the Tibolone) and caused your doc to change your prescription unnecessarily. I did note from the info that T3 levels remained unchanged, so if one of the marker hormones that they do measure altered - this might give a "false" prediction of T3 if you see what I mean? I don't really know what I'm talking about here - but just that there is an interaction and the docs don't seem to take this into account - as SueLW said they should have re-tested you and as well - taken into account your symptoms, not the readings...
Hurdity x
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Hi Ladies,
I managed to get a doctor app this morning for 9.30am which then proceeded onto my bloods being taken as well. I had all my notes with me and was very assertive when speaking to the doctor, she told me my T4 level suddenly surged to 37 last October, she thinks it was linked to a menopausal surge. The range should be between 20-25. My last thyroid test was in January then I was advised to alternate 50/75mcg, then I requested another thyroid check in May I was refused!
I told her I was surprised that I'm not being monitored more closely through all this! I said, I was diagnosed with fibro in April and basically left to my own devices without any help or advice. I told the doctor, I'm not expert enough to self diagnose myself!
Thankfully, she listened and popped me through for my bloods! I asked about T3 levels, she said they only do T3 etc when the thyroid readings are totally way off!!
I got a print out of January's readings - T4 level 17 (normal range 10-25)
- TSH 0.31 ( normal range 0.55-4.78)
Thank you for listening ladies, much appreciated 😍
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Just to say it's great that you can and do give your expert and knowledgeable input over thyroid treatment on this forum SueLW
Thanks for the mention Hurdity. But I'm not an expert. I'm still struggling to get right. But I have been studying thyroid for several years because I have known things weren't right and I do have a pretty good understanding of how both the gland and the medication should work when things go right. I have tried self-medication with NDT but menopause really confused the issue and so now I'm trying to do it their way with Levothyroxine. I struggle to raise dose and my TSH goes steadily up with medication, not down, so I'm being investigated for other things at the moment. None of my GP's would diagnose me because my TSH was below 10. In the UK you have to be nearly dead to get diagnosed! Everywhere else in the world uses a TSH around 3 and symptoms to diagnose.
So, I will help where I can, and point people to the better places to get further help. But it's not easy as mostly we end up needing to test privately to get anywhere. The lack of T3 testing in the UK now, and the lack of T3 medication, is cruel.
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Gosh sueLW you are a smasher great post and thank you for sharing your knowledge xx
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Hi Ladies,
I managed to get a doctor app this morning for 9.30am which then proceeded onto my bloods being taken as well. I had all my notes with me and was very assertive when speaking to the doctor, she told me my T4 level suddenly surged to 37 last October, she thinks it was linked to a menopausal surge. The range should be between 20-25. My last thyroid test was in January then I was advised to alternate 50/75mcg, then I requested another thyroid check in May I was refused!
I told her I was surprised that I'm not being monitored more closely through all this! I said, I was diagnosed with fibro in April and basically left to my own devices without any help or advice. I told the doctor, I'm not expert enough to self diagnose myself!
Thankfully, she listened and popped me through for my bloods! I asked about T3 levels, she said they only do T3 etc when the thyroid readings are totally way off!!
I got a print out of January's readings - T4 level 17 (normal range 10-25)
- TSH 0.31 ( normal range 0.55-4.78)
Thank you for listening ladies, much appreciated 😍
Sadly Renee, you have to become expert in hypothyroidism if you want to get well. Start with the Thyroid UK web site. Most GP's are not able to help you. They get less than 1 full day of training in 6 years on hypo AND hyperthyroidism. Less than one day to learn about the hormonal engine that drives the body. Many endocrinologists are no better. They are expert in diabetes these days and don't do thyroid patients any service.
Your GP says she thinks you had a hormonal surge due to menopause. I doubt that very much. You might have had a surge of sex hormones, but not thyroid hormones due to perimonopause. You most probably have Hashimoto's Thyroiditis, known in the UK as Autoimmune Thyroiditis. This is a condition that causes the body's defence mechanism to see the thyroid as a foreign body and attack it. As the attack proceeds, thyroid cells die and release a sudden flood of thyroid hormones into the blood stream causing a spike in T4 and T3 and possible hyper symptoms. But it doesn't last. The attack will fade and numbers drop. Over time your thyroid will be destroyed and your need for meds rise. She should have kept your meds the same and retested you in 6-8 weeks to see what changes there were. She should also have tested you for thyroid antibodies, both types. But I bet she didn't do that. So her credibility is out the window.
You say you had bloods drawn this morning. My heart sank at that. Did you take your thyroid medication before you went to the doctor's? You should arrange thyroid blood tests as early in the day as possible, before 9am. You should not take medicines before the test, take them when you get home. Fast from the night before and only drink water on the morning of the draw. TSH follows a circadian rhythm, it's is highest in the morning and lowest at night. Most GP's won't even know that. But if you always test at the same time of day and in the same circumstances (fasting and no meds) then you can compare each and every test result you get properly. If you took your meds this morning you will not have an accurate result You will have a flood of hormones in your blood.
Your T4 of 37 last year was definitely high enough to have warranted a T3 test.
You are at a crossroads now. You have to decide what you are going to do. You either give up and rely on your GP for everything which will most likely mean you feel rubbish for years. Or you can start to learn and help yourself. The first thing you need to do is pay for a full thyroid panel blood test that will give you all the answers you are currently missing. I've told you about Thyroid UK and HealthUnlocked, you need to read the information on Thyroid UK and use the links they have to buy the blood test. You would follow my instructions above about fasting and no meds before the test. People on HealthUnlocked will be able to guide you over your test results and then you can go back to your GP and discuss the full results with her. The two big things this test will tell you is a) confirmation that you have Hashimoto's and b) your Free T3 level, which will tell you if you are converting T4 to T3 successfully or not. Some people need to add some T3 to their medication to feel well if they can't convert.
If she won't give you the meds you need, and you want them, you will have to either swap doctors or go privately or buy your own. This is a very common thing for hypothyroid patients to have to do.
You also might have vitamin and mineral deficiencies which could make it difficult for the thyroid meds to get into the cells. So you should ask your GP to test the following for you and again get the results and reference ranges and see what needs supplementing. Being "in range" is never enough. We need to be optimal. Again, there are some very knowledgeable people over on HealthUnlocked where optimal vitamins and minerals are concerned and what to do about it/how much to take and of what type.
Vit B12
Vit D
Iron panel to include Folate and Ferritin (the iron storage capacity).
Your last results show a THS of 17 in a reference range of 10-25. This means your Free T4 is just under halfway in range. That's low enough to have given you a dose increase. 50 mcg is a starting dose. You would not expect to stop there or even on 75. You need the T4 to be in the upper part of the reference range. And that's before we even know about your T3. Your TSH is low, but what time of day was that test taken? And anyway, GP's are too scared of the TSH. They need to ignore it and concentrate on your symptoms. Everything you have said so far has a big hypo arrow pointing to it.
It's over to you now. Will you take things into your own hands? You can do it. Have you watched Dr Renee's video yet? That will help start you off.
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Gosh sueLW you are a smasher great post and thank you for sharing your knowledge xx
Thanks! I've just written War and Peace below which you posted this! I hate the way hypothyroid patients are treated in the UK. I think it's worse than menopause treatment. There are choices for HRT, and there are some doctors around who know what they are doing. There is zero choice and very few knowledgable doctors for hypothyroid patients. People are left bed-bound because their GP's are slaves to the TSH blood test and refuse to test Free T3!
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I agree Daisydot...SueLW has been a great source of info and help for me this weekend. Shes given me the confidence to ask questions etc. I still didnt get my T3 checked but Iv looked up private testing and even my hubby is on board. So, Ill know in a few days what these bloods say and take it from there.
Thank to everyone of you ladies who have supported me this weekend but a huge thanks to you SueLW 💞
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Thankfully I took the advice on the thyroid uk site and didnt take my thyroxine this morning and no food.
The nurse who took my bloods is the designated thyroid nurse and promised me she would personally look for my results and if she felt they needed further indepth bloods she will then press one of the doctors for T3 and other indepth bloods. I recently had my B12 and Vitamin D bloods and they were fine.
If I dont get further investigation I will then purchase the more advanced private blood tests that I saw linked on the thyroid UK website (think it was £59). Well worth it though. Personally I would like to wait a few days, see what my readings are and if the nurse is true to her word then I will get my T3 bloods.
Im on the case now SueLW. Thank you 😊
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Yes I get that sue it's great you have built up such a knowledge,many years ago around 35 years I was having physciatric treatment for pnd and they said my thyroid was bad and I needed an implant of iodine pellet? Sorry I'm so vague but I genuinely don't have much memory of it because of the treatment I was having ECT for one.Ive always questioned my thyroid but any teststing they always say I'm fine and so of course we trust them don't we.
My last test around four weeks ago just said serum tsh level 1.49 normal patient advised.nothing else was tested.Its very difficult to get that balance between what's meno related and what's not isn't it as I do think there's a lot of crossovers.i wish I had the knowledge 35 years ago that I have now and I'd never ever let them take control like they did and give me the most barbaric treatments known to man,I actually moved back to city living from the country to try and escape their clutches and didn't register with a doctor for a long long time I was so young and scared.theyll never do that to me or mines again.xx
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Thankfully I took the advice on the thyroid uk site and didnt take my thyroxine this morning and no food.
The nurse who took my bloods is the designated thyroid nurse and promised me she would personally look for my results and if she felt they needed further indepth bloods she will then press one of the doctors for T3 and other indepth bloods. I recently had my B12 and Vitamin D bloods and they were fine.
If I dont get further investigation I will then purchase the more advanced private blood tests that I saw linked on the thyroid UK website (think it was £59). Well worth it though. Personally I would like to wait a few days, see what my readings are and if the nurse is true to her word then I will get my T3 bloods.
Im on the case now SueLW. Thank you 😊
Brilliant!
Excellent outcome. I'm so glad you had read up about the (no meds and fasting). You didn't mention any of the links I banged on about so I wasn't sure you had read them. Lethargy is a common thyroid issue.
Also, excellent that you have the nurse on board. Still get the copies though. She will, to some extent, be bound by the same thinking at the GP's, but might be more switched on as she has less range of topics to cover and might have done some research. It would be lovely if she were on your side and able to push a bit for you.
Do you know what your B12 reading was? The reference range is staggeringly huge and people at the bottom end of it can be very symptomatic. My mineral issue is Ferritin. I struggle to raise it. It's in range, but for hypo patients it should be around 70-80 and mine is stuck around 39. I'm eating pate and black pudding for breakfast most days in an effort to get the levels back up. The rest of my iron panel is good. But poor ferritin will cause issues with thyroid hormone.
I'm really pleased you have had early bloods done and no meds. Now you will see a better picture.
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Yes I get that sue it's great you have built up such a knowledge,many years ago around 35 years I was having physciatric treatment for pnd and they said my thyroid was bad and I needed an implant of iodine pellet? Sorry I'm so vague but I genuinely don't have much memory of it because of the treatment I was having ECT for one.Ive always questioned my thyroid but any teststing they always say I'm fine and so of course we trust them don't we.
My last test around four weeks ago just said serum tsh level 1.49 normal patient advised.nothing else was tested.Its very difficult to get that balance between what's meno related and what's not isn't it as I do think there's a lot of crossovers.i wish I had the knowledge 35 years ago that I have now and I'd never ever let them take control like they did and give me the most barbaric treatments known to man,I actually moved back to city living from the country to try and escape their clutches and didn't register with a doctor for a long long time I was so young and scared.theyll never do that to me or mines again.xx
Iodine pellet! Never heard of that treatment. I don't think they do that now. Too much iodine is as bad as too little.
A TSH level of 1.49 is pretty normal. But what time of day was it taken? Next time you have one get it first thing and fast from the night before, but drink plenty of water before you go or your veins will not be in a giving mood after a nights sleep. You could do a private test too if you wanted to be sure. Again, it's the Free T3 that's important. It want's to be in the top 1/4 of the reference range.
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I have a goitre and 2 close family members had the same. Both deceased now. My goitre is occasionally painful but tests always say normal. I als had it scanned at one point and was told there are lots of small cysts and should be tested yearly but that never happens unless I push for it which I rarely dare do. I've no idea whether I should be doing anything about it or not?
Robin
Xx
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My blood test was fasting at 9am nurse was great and got me in quickly.My mother had under active thyroid amongst other things,she was only ever on Valium in those days I remember that,the usual drugs for just about everything then were valium or phemabarbiton.No wonder my parents had such harsh lives I don't know how they did it.xx thanks sue xx
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I have a goitre and 2 close family members had the same. Both deceased now. My goitre is occasionally painful but tests always say normal. I als had it scanned at one point and was told there are lots of small cysts and should be tested yearly but that never happens unless I push for it which I rarely dare do. I've no idea whether I should be doing anything about it or not?
Robin, goitres are out of my area of knowledge. But I doubt it should be ignored. If I were you, I would go over the HealthUnlocked and join the Thyroid forum and ask for help understanding what you should do about a long-term goitre.
You will find help there. You almost certainly need to be supplementing something, but I'm not sure what.
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Thanks Sue I'll do that and I might also consider a full thyroid test once Im settled on my HRT regime and my bank balance has recovered
Robin
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Iv just joined the thyroid uk forum too. 😊