Im 65, Ive been on Levothyroxine since mid 90's, at one point on 150 dosage, since menopause bloods reduced me to 100. Since menopause also been on Atorvastatin for high cholesterol. Ive never been told not to eat or take other meds after my Levothyroxine dose either! I suffer from SAD this time of year and take a Vit D mouth spray to help this during winter months. I have not felt "right" since menopause, I also feel very depressed. Doctor says due to Covid have to go hospital for blood tests which are well overdue due to Covid, Im wary going to hospital due to Covid risk as I dont even shake off colds easily.
Having read some of the posts I feel doctors in NHS dont take thyroid issues seriously so I want to get a full bloods check done, doctor keeps offering antidepressants which I dont want as yet another medicine to take and im not convinced its true depression, more a daily struggle to keep going and brain fog.
Can I please have a list of private contacts near Hertfordshire (pref not London as wont go on public transport right now) as feel would be beneficial to get full bloods done, get dosage right, vits added if needed and get myself feeling well and gain more energy again. A bonus would be getting my statins gone or lowered.
I had no idea all these years prior to joining this group how complex underactive thyroid is! Im concerned for long term health issues if my levels are incorrect. Guidance needed please! I find all the T readings confusing and hard to understand so really need some help here. Thank you!
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Jbird1955
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What were your blood results when your Levothyroxine was reduced? Most doctors go by the TSH which is a pituitary gland hormone and it is the T4 and T3 that give a better indication of thyroid hormone levels. Sometimes depression can be a sign of low thyroid levels and you might just need an increase of Levothyroxine.
Afraid Ive no idea, Ive never been given any results, just meds adjustments when doctor has felt appropriate. Ive never questioned it till found this group. So I should ask for T4 and T3 blood test is that correct?
We all have to start somewhere and you have made a good choice.
I started off here about 4 years ago, simply reading other peoples posts and the answers they received and trust me, it will all fall into place, just like a jigsaw, it's difficult to start, but slowly the corners come together as do the adjoining pieces.
You might like to also read up on the Thyroid uk website which is the charity behind this amazing forum where there are details of private companies who will run the full blood tests for you, which can be taken " at home " or no doubt locally to you
So, first and foremost we need to see the blood test results and ranges from a full thyroid panel, to include TSH, T3, T4, antibodies plus ferritin, folate, B12 and vitamin D . and if your doctor is unable to run this full thyroid panel you can pay and have it undertaken privately.
No thyroid hormone works well if the above mentioned vitamins and minerals are not at optimal levels as your body needs to be able to convert the T4 - Levothyroxine into T3 which is the active hormone that the body runs on.
Once with these results and ranges you post it all back on here and you will be talked through anything that needs addressing, initially with your local doctor.
There is no need at this point in time to see a " specialist ' or get stressed travelling anywhere, as you need to know and understand what's going on yourself first, so to know, understand the basics and take back some control of your own health.
Thyroid uk do hold a list of " sympathetic endocrinologists and doctors " but you'll be hard pressed to find better than the Admins on this forum who can advise in the first instant once they see some evidence through a full thyroid blood test panel.
Your post is not uncommon and I feel sure once we have some results people better able than me will be able to make detailed comments, as otherwise everything is a " guess " and that's not constructive to anybody.
Well, let's hope it covers the basic thyroid tests including T3 but sometimes if the TSH is in range the laboratory do not test any further, and if they do, generally it is just a T4 ;
There doesn't appear to be the vitamins and minerals as detailed, but it's a start that hopefully, when we see the results and ranges, might offer some clues as to what's going on.
If you really want to see someone privately, a lot of Endos are now offering video consults. It’s not perfect as they can’t properly examine you but you can get a review of blood results and talk through symptoms.
The advice on these forums is great however doctors still hold the cards in terms of prescribing so you will need an Endo or a GP who listens.
Can I just endorse everything that pennyannie has said and add - SeasideSusie gives really useful tips on how to do a blood test at home - click on her name and look at some of her replies to other people; and helvella has done a really good glossary (look at "pinned posts") of all the technical language relevant to thyroid issues.
When you get your bloods tested - ALWAYS have an early morning blood test (when TSH is highest) and a week after stopping taking any supplements with biotin in) - post your blood results (in a new post) with the lab ranges after each result in brackets (these vary from lab to lab) and the lovely people here will help you to understand them x
Before considering booking an appointment with any endocrinologist, you first need to
A) get hold of all your previous test results
B) get full thyroid and vitamin testing done at correct time of day ......most likely some will need doing privately.
A) You are legally entitled to printed copies of your blood test results and ranges.
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. 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.
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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Rarely has GP done more than TSH
B) Getting new blood tests
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
Do you know if cause of your hypothyroidism is autoimmune thyroid disease?
Ask GP to test vitamin levels and FULL thyroid including Ft4 and Ft3 (plus thyroid antibodies if never been tested)
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)
GP unlikely to get everything tested
Anything not done, test privately
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Highly likely to have very low vitamin levels if been under medicated. First step is to improve any vitamin deficiencies by supplementing and to get levothyroxine dose correctly fine tuned
Come back with new post once you get old test results and new blood tests done
Meanwhile Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
With pandemic, many endocrinologists are doing consultation by zoom
But waste of time paying for consultation without getting all bloods done
Ideally, you would improve all vitamins to optimal and then run blood retest in 2-3 months
Likely to see considerable improvements
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
There is a strong link between depression and thyroid problems. If you google for 'depression and thyroid' or something like that, you'll be able to read various articles about that. I just found this one which looks helpful. (and I liked the heading!)
As for menopause - mine was horrific until I found help. It was the days before home computers and google, so I raided my local library. I kept seeing references to the Women's Nutritional Advisory Service (alas no longer exists) so I thought that would be a good place to start. The doctor there was extremely helpful and advised me on changing my diet and taking the supplements that I needed. My thyroid problem wasn't diagnosed until some years later. I tried HRT but it didn't agree with me. It took time, but I made it through the menopause without drugs.
So what I'm saying is to make sure that your vitamins and minerals are optimum. I remember him saying that if you get your nutrition right, then any medical problem will present more clearly and be easier to diagnose.
Best wishes and keep on fighting and learning as much as you can.
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