Hi all. I am looking for advice/suggestions on which way to go next. Obviously GP's are not interested. I have multiple signs and symptoms of hypothyroidism, with a strong family history on one side of my family, and it's probable on the other too-we're not the best at communicating. I test low FT4 via private tests, but scrape just into normal by NHS tests. I have now confirmed that I have the DIO2 polymorphisms-from both parents. I have a diagnosis of ME/CFS. I have previously used metavive with improvements, but with a major upheaval/moving/taking on my now 4 yr old great nephew and changes to the metavive, meant i ended up stopping. I am struggling with my level of pain and fatigue now and have little in the way of support around me.
Now I am determined to take control again but not sure whether to try a private endo? or try an alternative way of accessing T4 & T3 meds/NDT. would I just be wasting money |(that I don't really have) trying the private endo route? GP has been messaging NHS endo-but they aren't interested.
any suggestions or advice would be gratefully received.
my recent NHS and most recent private bloods as below for info,
Many thanks
NHS
TSH 2.13 0.34 - 5.6 mu/L normal GP 9/3/2023
FT4 8.7 7.7 - 15.1 pmol/L normal GP 9/3/2023
FT3 4.7 4.3 - 6.8 pmol/L normal GP 4/7/2022
Private
TSH 3.25 0.27 - 4.2 mu/L normal monitor my health 25/5/2022
FT4 11.3 12 - 22 pmol/L LOW monitor my health 25/5/2022
FT3 3.9 3.1 - 6.1 pmol/L normal monitor my health 25/5/2022
TSH 1.62 0.27 - 4.2 mu/L normal medichecks 05/01/2021
FT4 9.44 12 - 22 pmol/L LOW medichecks 05/01/2021
FT3 3.12 3.1 - 6.8 pmol/L Normal (barely) medichecks 05/01/2021
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Kasty
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Have you ever had your thyroid antibodies checked, because you should that.
Have you recently had key vitamin levels checked - ferritin, folate, B12 & D3? If hypo you are likely to have low levels due to low stomach acid.
Do you take any supplements?
Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
Guidance in the UK means that you can't get a diagnosis until your TSH is over range on 2 consecutive occasions with NHS tests or once over 10.
It may be that getting your vitamin levels to optimal may raise your TSH.
Hi Jaydee1507, thank you for your reply. yes, had antibodies checked previously, & were fine. yes to recent vits check - i missed posting those tests see below. I provided some of my bloods from private tests in my post, I have done quite a lot over the last 5 yrs. I take various supplements including multivits/mineral, oral B12, vit D, magnesium, betaine & digestive enzymes (which has made a huge difference to my IBS). recently reintroduced selenium and iodine. I've given up on NHS route, especially since receiving the DIO2 results. I stopped using strong steroid creams about 18 months ago, and my TSH has risen slightly since, and my saliva cortisolx4/24hr has dropped from high all day, to within normal range all day.
other bloods done recently
B12 827 >160 ng/L normal GP/oral supps 9/3/2023
Folate 7 3.8 - 25.0 ug/L normal GP/oral supps 9/3/23
ferritin-plasma 30 11 - 307 ug/L normal GP 9/3/2023
vit D 84 50 - 200 nmol/L normal GP/oral supps 9/8/2022
thyroid per ab 4 0 - 30 ku/L normal GP, previously-0 10/02/2021
DIO2 CC rs225014TT polymorphism regenerus 22/02/2023
Unless your TSH is close to or definitely over range I think you would be struggling to get a diagnosis even privately unfortunately. It may be possible with a rare doctor but couldn't be at all guaranteed. Positive antibodies would help.
Your TPO antibodies were negative on this test but its always worth retesting as they do fluctuate. Have you ever had Thyroglobulin (TGab) antibodies tested? NHS doesn't test them so would need to be privately.
The cheapest test currently available is from Randox Heath which includes antibodies if you're OK with finger prick tests. randoxhealth.com/at-home/Th...
I can see that your FT3 is very low so no wonder you have energy issues and likely many more.
Iodine is not recommended unless you have been tested and found to be low. Iodine deficiency is unlikely in the UK. This post has a lot of information about iodine. healthunlocked.com/thyroidu...
I'm not sure what 'oral supps' means where you have posted your results. Did you start taking supplements after the blood tests or were you already taking them?
Your folate is too low. Folate - aim for a level of 20. Recommend taking an active/methyl (should say on label) B complex which contains 400mcgs folate (also B12). Occasionally some people require a higher dose of folate, often due to having MTHFR genes in which case buy a separate 400mcgs methylfolate and slowly add to your dose over several weeks. This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft...
What is in your multivitamin?
Multivitamins are not recommended in this group for a number of reasons, including being too low a dose to raise levels to optimal, including iodine which is not recommended when hypo and including iron which prevents absorption of the other vitamins and should be taken apart from other vitamins/Levo.
You would be better off switching the multivit to a good B complex.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...
Ferritin is deficient according to NICE who state a level of 30 or less to require treatment. Point this out to your GP who should prescribe iron. Yu should also get a full iron panel done.
Ferritin should be around 90 - 100. Suggest also increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc
Have you had your female sex hormones tested. There was a comment from a member that a Consultant had mentioned that those diagnosed with CFS mostly had negligible testosterone!! Low testosterone equals muscle weakness and fatigue.
That test is 6/7 years old 😱 it’s just as important to have good levels of female hormones post menopausal. I’ve done the Regenerus cortisol/DHEA. My DHEA was unmeasurable, below the bottom of the range. I followed that with a Medichecks female hormone test and my testosterone was too low to register a measurement. I have extreme muscle fatigue and I’ve recently been prescribed testosterone - I’m 78 years old but still deserve some quality of life and, if you don’t advocate for yourself, you’ll get nowhere with your GP. All I get from him is “have you thought it could be age related” . I get my own tests done and present him with the evidence. Of course, he had to do his own which just confirmed my private ones.
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