Hi, I'm 34 year old female and I've been trying to get to the bottom of my symptoms for nearly 10 years! I feel that I have some form of Thyroid disease or something associated with one, but I keep hitting a brick wall with NHS norms.
At my lowest my TSH has been 0.39
Currently my TSH is 0.55
My lowest free T4 has been 11.8
Currently free T4 is 14.4
I have been refused the free T3 on the NHS as i'm considered in the normal ranges for TSH and free T4. I have recently had a Serum thyroid peroxidase antibody test with a result of 28 kU/L [< 100]. I'm not quite sure what this means but apparently again this is normal range.
My MAIN symptoms are;
Tired all the time
Cold all the time
depression
hair loss
dry skin
weakness
heart palpitations
dizziness
headaches.
On my most recent blood results I have been found to be both Vitamin D and Folate deficient and have been prescribed Folic acid and Vitamin D as of today, but with no explanation of investigation as to why they have dropped so low.
I guess what i'm asking is...am I grasping at straws with this ongoing for so long (is it all in my head?) or am I right in thinking this is a Thyroid or possibly pituitary issue that the NHS is unwilling to look into due to what they consider to be normal test results?
If I am right, what can I do, to get them to listen? I've seen various Dr's but I just get palmed off with medications to treat the symptoms rather than looking for the cause.
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Aeowin
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Are you in the UK? I don't know what you consider to be expensive. You can buy private tests that require only a finger-prick sample of blood. Getting blood samples taken by a phlebotomist adds to the price. You don't have to pay to see a doctor. Test results are sent to you via email or are viewed online, and most companies selling tests will offer a doctor's (written) opinion on the results, but this is optional. Any doctor's opinion will be based on the same training and guidelines as the NHS uses.
As far as I know, my great Aunt was thought to have had a thyroid issue although was never diagnosed. My other auntie had a lot of issues, not thyroid though, it was early onset rheumatoid arthritis amongst other things.
No other thyroid issues in my family I'm aware of....
Ah I see, well, there has been heart issues in my family but it's difficult to say if it was autoimmune as most family members were elderly when the problems occured, so might have been age related??
There is arthritis in both sides of my family but on my mother's side, again, it occured with age. Only my auntie on my father's side has had a lot of early onset problems.
No blow to the head or huge blood loss.
Is Serum ferritin level 33 ng/ml (10 - 322) considered low?
Since there has been no clear view on thyroid from comments on here so far (except maybe T4 conversion), I'd suggest a natural protocol. This should help your overall system rather than thyroid specifically but the thyroid is part of it anyhow. To save cost, you could try a DIY approach using the internet by following autoimmune paleo. Since over 80% of health is from the gut (good and bad), it's probable your problem starts there. If you really want to know, you could test but it's not cheap so maybe just monitor by how you feel over time.
I should add that you ought to be sensible in other areas eg give up alcohol, consider/eliminate medication that may be causing side effects. Also include exercise and meditation.
I'm wondering if you have been through pregnancy, as this is often when our problems begin.. Equally relevent is hormone issues with endometriosis, PMS or irregular periods or being on the pill. Excess oestrogen can block T4 conversion.
Low iron can cause many of your symptoms such as fatigue, hair loss, palpitations, dizziness, headaches. I suspect you’ll feel a big improvement if you can get your ferritin, vit D, folate etc up much higher, following the advice on the forum. I had (still have some) those symptoms while I had woeful ferritin. I’ve seen an improvement in the dizziness, palpitations and headaches since improving my level but still have a way to go.
Another long shot but have you been tested for coeliac disease? The low vitamins (especially vit D and iron), fatigue and depression are all common in coeliac disease. Many people with it have no digestive symptoms at all. I was gob smacked when I was diagnosed coeliac. I only did the test because I was going to have a go at going gluten free for 6 months to see if it helped my Hashimotos and was following advice on here about doing the test first. Glad I did!
this was me 15 years ago i went to gp told her my symptoms she said straight away its your thyroid did blood test came back within range so that was it i went back was put on anti depressants didnt help had all the symptoms and they werr getting worse. so eventually started my own research found the book by dr peatfied and things started to make sense went to see him and he told me what tests to get including a 24 hour urine test which showed how much my thyroid was using in 24 hours my t3 was on the floor dr peatfield said i was extremly hypo but not according to the standard nhs tests x
Thank you everyone, that's given me a lot to think about and possibly an answer or two. I will see how I feel when I complete my 3 months course on these folic acid and vid d supplements, see what the repeat bloods are like, then get those extra tests done through Medicheck just so I will finally know one way or another if it is a Thyroid issue.
If you want to ensure a faster uptake of folate you'd probably be better off taking methylated folate in a b supplement like Igennus Super Bs or Thorne. Folic acid requires conversion in the body. I read somewhere that Methylfolate or MTHF is allegedly 70 times better absorbed. Some people have low folate (and chronic fatigue type symptoms) as they are not very good at converting synthetic folic acid into folate and thus absorbing it. It figures that your symptoms began after pregnancy as that places the greatest demands on the body for folate.
If you were prescribed Vitamin D by your doctor the dose is probably much too low.
A daily supplement of around 5,000 IU (125 mcg) of vitamin D3 is needed for most people. There is no danger in taking this amount. The 2010 US Institute of Medicine (IOM) report indicates 10,000 IU/day is considered the NOAEL (no observed adverse effect level).
As I said these are possible lines of further investigation as you might have EBV (Epstein-Barr) or Lime disease without knowing about it other than through symptoms. Both of these conditions can stay dormant in your system for years and activate when you have another infection or acute stress etc. They may also not show in the lab blood tests. Mine were picked up by a kinesiologist rather than doctors. Stress doesn't help anything and is very often the root cause of many health problems so finding some way of de-stressing is beneficial. Yoga, meditation, acupuncture, TRE exercises, BWRT - lot of modalities out there to choose from.
Hope you will find your way through it all. Usually it takes time and patience but you have found the right place to ask questions here
You might also like to read Paul Robinson's Thyroid Patient's Manual book for more information.
A thought occured to me. I had a blood transfusion nearly 10 years ago after a traumatic birth of my second son....seems to coincide with when I first started getting symptoms...can a blood transfusion have anything to do with it? Even 10 years down the line??
I ma not a specialist but I daresay that anything that involves blood has a potential to transmit something despite all the safety protocols. Also it might have been just the sheer trauma of the birth that activated something dormant, and obviously thyroid problems are quite commonly diagnosed around pregnancy.
It also seems you never had the thyroid antibodies tested either? If you have Hashimoto's (certainly you have lots of typical symptoms) or Graves than your labs might be textbook but you will still feel cr*p.
I had the Serumthyroid peroxidase antibody concentration which was < 28 kU/L [< 100] but not the thyroglobulin one (NHS refused to do the thyroglobulin or the Free T3). I'm going to save up over the next few months and pay for the Thyroid check plus from Medicheck that does them all.
Post partum haemorrhage can cause secondary/central hypothyroidism (Sheehans Syndrome), and although you said no major blood loss, it must have been low enough to need transfusion
Hi everyone, just a little update. On the plus side I don't feel as cold anymore, not sure if taking iron and Folate has helped there, but I still have all the other symptoms going on, plus both my eyelids are very dry and flakey. One eyelid was a bit flakey before, but now both?
Looking forward to be able to pay for private tests in January....
Another symptom/something new....a couple of times over the past few weeks, when I have looked in the mirror, the pupil of my left eye seems to be misshapen. Most of the time it's like a semicircle like half my pupil is just missing and other times it's kind of cat like or like an ink blot rather than a perfect circle. I have no pain or visual problems that I've noticed. At first I thought I was imagining things or that it was the light reflecting off the mirror making it look odd, but tonight a few members of my family saw it for themselves...have any of you heard of anything like this linked to Thyroid issues? Or is this something new?? The closest I've been able to find online is "tadpole pupil" I'm going to book to see my optician, just to be on the safe side.
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