Hello all, new here and very much in need of advice. Following a stay in hospital a few weeks ago for a seizure, my consultant stopped me on the way out and asked me if I knew I had Hypothyroidism? I said no and he said to see my GP as soon as I was feeling better.
For background; My health has been in decline since 2017 after a full hysterectomy. My hair started to fall out and I am always fatigued or aching, or have numb fingers and toes, puffy face, hands and feet, I've gained weight which I find hard to shift, cold hands and feet, haven't been able to tolerate alcohol for many, many years now, get dizzy when I stand up, constipation or diarrhoea, psoriasis on my scalp which I've had for over 20 yrs and won't go away. I could go on with these symptoms but we'd be here all day. I have been tested for thyroid in the past and the markers all come back under the threshold of concern. I was given HRT a few years after my hysterectomy but it only stops the hot flushes, doesn't help the fatigue. Last year due to scarily high levels of cholesterol, I had a mini stroke and surgery later on my carotid artery - I had a severely blocked artery the kind you see in someone in their 70's - I'm 56. I went back to the gym just a few weeks ago to try and regain some strength and do some light cardio and shift some weight which is hard with the fatigue and then the seizure happened.
I managed to get a phone appointment with a Dr I've never dealt with before, he seemed angry with my consultant but I ran through my symptoms and he (to shut me up I think) agreed to prescribe Levothyroxine 25 mg. My concern is that I take blood pressure medication (Losartan Potassium 100 mg) and an antiplatelet medicine (Clopidogrel 75 mg) which I'm not sure I can take with Levothyroxine? And now my Dr has me questioning if the consultant was right even though they ran extensive tests and had more than a few meetings because they couldn't find out why I had a seizure or why it took me so long to respond to treatment. The Dr said he could see my bloods and there were no problems.
I know menopause is horrible but I feel unwell most days and I'm several years into it. I have to rest between chores, my confidence is at an all time low, I don't want to see friends or family I just can't put everything down to menopause anymore.
If you have advice, I will gladly listen! Thanks.
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As your doctor seems unenthusiastic about actually doing his job, I'd suggest doing a private finger prick blood test yourself so you can be armed with tbe information you need. Somewhere like medichecks and monitor my health do tsh/t4/t3.
With those results people here can give you advice and firm support on how to proceed. GPs tend to test only tsh which doesn't give a full picture.
You certainly describe a lot pf hypothyroid symptoms.
I'm browsing through the forum and that really does seem to be the case doesn't it? Unbelievable that GP's seem to know so little about this condition...still!
You are legally entitled to copies of blood test results
Have you seen any test results?
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. Easiest option is NHS app, you may need "enhanced access" to see blood results.
If you can’t currently see test results online, simply ask receptionist at GP surgery to give you access. You will need to have photo ID with you.
This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details
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 to see if your hypothyroidism is autoimmune
As you have psoriasis (autoimmune) it’s highly likely your hypothyroidism is also autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels likely
25mcg is very low dose levothyroxine but with your medical history GP is being cautious
Standard starter dose is 50mcg
Bloods will need retesting 6-8 weeks after each dose increase in Levo
Levothyroxine is typically slowly increased over 1-2 years until all symptoms improved and thyroid levels are OPTIMAL (not just within range)
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
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
Wow! Thank you so much. My knowledge so far is "Take one each morning" no advice from pharmacist whatsoever, this is beyond helpful. I do use the NHS App so will look into blood results or ask them to print them off for me . Thanks again.
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
It does sound as if you are very hypo, given your history and symptoms. So, if I were you, I wouldn't doubt the consultant, just take the levo. It won't do you any harm even if it doesn't do you any good. But it would be a very good idea to try and get hold of any thyroid blood test results you can, post them on here and let's have a look. Your GP may very well say he's seen the bloods and there were no problems, but he's not an expert. One thing you have to know about GPs is that they know next to nothing about thyroid and they've never been trained in how to interpret blood test results. Oh, they can see the obvious, like if there's something under or over-range. But they do not understand how one result affects another. For example, high cholesterol usually suggests a thyroid problem. But highly unlikely that a GP would know that.
So, if you can't manage to get your blood test results from the hospital - and I know that can be difficult - or get hold of any of your past thyroid tests - there's always the possibility of going a private blood test. It's usually a very good idea to get private testing because you can get full thyroid testing which doctors will very rarely do. You need:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
That will give you a clear picture of what's going on with your body.
In the meantime, make sure you get plenty of rest, and good, nourishing food. Don't worry about the weight-gain. That is another low thyroid symptom, and has little to do with your diet. Go easy on the exercise, it won't make you lose weight and could have the opposite effect. Just gentle walking and swimming until we have a clearer idea what's going on with your body. Avoid stress as much as possible, and don't worry! Millions of people have thyroid disease but still manage to live normal, happy lives for the most part. And educate yourself - knowledge is power. Read as much as you can on the subject, read the posts on here and follow the links, And if you have any questions, don't hesitate to ask.
Honestly, I can't thank you all enough. I'm lost for words. I feel like I'm already about to turn a corner and I'm going to be armed to the teeth with knowledge. I'm also glad to hear about the exercise because I wasn't sure how hard to push myself when I fully recover which can take up to 2 months - right now I can barely manage the stairs lol
Don't push yourself. Take it easy. One step at a time, whether it be stairs or life. Pause when you need to and breathe. Deep breathing is also helpful.
The GP had me questioning everything the consultant said. I'm so glad I found you all because I was losing my fire. You've all handed me a flame thrower lol
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