Introducing a new member: Hello folks, this is me... - Thyroid UK

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Introducing a new member

Fairflow profile image
11 Replies

Hello folks, this is me here :-)

My mother had and my 3 siblings and I still share a history of hypothyroidism. Each of us takes levothyroxine on a daily basis, except my mother died a few months ago at the age of 90 after many years of slow physical and cognitive decline. I've been taking it for around 25 years after my low thyroid function was discovered on blood tests done to investigate a brief but alarming episode of atrial fibrillation. One of my sisters and I also have elevated cholesterol levels, though my HDL/LDL ratio is relatively good. I suspect that the fibrillation was related to very elevated TSH levels but I've not been able to find any research on this. I've also been caught with high blood pressure from time to time and I'm currently monitoring this with kit I borrowed from my GP's practice. It seems to vary a lot, throughout the day and from day to day.

I understand that low thyroid and high cholesterol are positively correlated and I'm always surprised when I hear of people being diagnosed with hypothyroidism but not having their lipids investigated. Whenever I get a TSH/T4 blood test via my GP/NHS, I ask to have lipids and thyroid function tested at the same time. If i didn't ask for the lipid test each time it would not get tested, which also surprises me. We have a family history of heart disease, our father died from coronary heart disease and complications from atherosclerosis surgery (quadruple bypass) at the relatively young age of 77, and our grandfather on his side died in his 50s of a sudden heart attack, we never knew him.

Wanting to live a longer life than my father, and possibly my mother too!, I'm taking active steps to improve my health. Over the last few years I've been getting into much more exercise, cold water immersion and experimenting with diet a lot (e.g. Keto diets, fasting, supplements). I ran my first full marathon on my 68th (most recent) birthday, which I'm quite proud of, though my time was slow (5hrs 8mins or so).

I've found this community from the trail starting from the latest Jo Rogan podcast with Gary Brecka, who is big into the MTHFR gene and the folic acid/folate debate, and that took me to Bing to search for genetic testing services, which led me here via 23andme and MTHFR .

I'd be interested to hear from anyone with similar experiences of high cholesterol, atrial fibrillation and hypothyroidism.

Oh, btw, there were a lot of suggested tags for this post, but I accidentally deleted a bunch, perhaps I'll find a way to add them back.

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Fairflow
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11 Replies
RedApple profile image
RedAppleAdministrator

Welcome to the forum Fairflow, and huge congrats on your marathon achievement! What was / is your experience with the cold water immersion? (Some folks with hypothyroidism don't cope well with this).

It sounds as if your hypothyroidism is currently well managed. A few questions purely out of interest:

Do you happen to know whether your hypothyroidism is autommine (diagnosed by a positive antibody test)?

And how much levothyroxine are you taking?

An do you happen to know what your most recent thyroid test results were?

Fairflow profile image
Fairflow in reply to RedApple

Thanks for your kind reply. Nice to hear back so soon! I'm never enthusiastic about the cold water but I take cold showers most weeks and go in the local stream for up to 3 minutes, usually after running or other exercise. Also played with sea swimming at all times of the year but don't often get there in winter. I find it particularly good to have a cold bucket dunk or shower after a sauna session in the local gyms.

The only real difficulty I have is that if the water is cold enough, I get a furious skin itch over most of my body after the cold; it lasts about 10 minutes and goes when I warm up again. I wonder if that symptom may be associated with my thyroid function.

Though my discovery of endurance exercise is recent, I have led a fairly active life before and after retiring as a teacher; we run a horticulture project and that involves heavy lifting and work with compost, wheelbarrows, etc. We have been repairing and upgrading our rather decrepit farmhouse and the building work is sometimes very strenuous.

I'm not sure if my hypo being controlled is the right term. I still feel by default pretty tired, I've just got very used to it. But on the other hand, that largely goes if I exercise. I have never had an antibody test, no medic has suggested it. My mum had Hashimoto's supposedly so I expect there is an autoimmune component.

I'm on 150ug levot. daily. Been stable for about 5 years now. I had a more detailed blood test a few months ago, I'll share it when I can dig it out. Thanks for asking!

greygoose profile image
greygoose

Hi Fairflow, welcome to the forum. :)

Yes, there is a connection between hypo and high cholesterol - low T3, in fact. T3 is the active thyroid hormone, and when it's low, it causes all sorts of symptoms, like high cholesterol and heart problems. Hearts need a lot of T3.

TSH itself does not cause symptoms. It is just a chemical messenger between the pituitary and the thyroid, telling it to make more or less thyroid hormone.

Testing cholesterol can be a double-edged sword, because if it's high, the majority of doctors want to prescribe statins. And that is really not a good idea!

The most important blood test is the FT3, and they rarely even do that.

Congratualtions on your marathon! That's fantastic. :)

Don't worry about the tags. I don't think anyone takes any notice of them, anyway. :)

Fairflow profile image
Fairflow in reply to greygoose

Thanks greygoose, that's very interesting. My last visit to a junior doctor had her recommending statins. I declined, I don't like the idea at all.

greygoose profile image
greygoose in reply to Fairflow

I'm glad to hear that! Statins are terrible things. Especially if all you need is a decent level of T3. But she probably didn't know what T3 was. Not many of them do.

Charlie-Farley profile image
Charlie-Farley

Hi Fairflow

Welcome to the forum. Sounds to me like you are already on the self education route to getting the best out of life 🤗. If you are on Levo and sounds like doing well (marathon! 🤩) you need to read some lived experience and search this forum for topics of interest.

Just to warn you NHS thyroid function tests are ‘medical catchphrase’ with so few measures as to render them pretty useless. I talk about it on my bio and posts (on my profile - click on my face if you want a gander). Most of us just use private tests to monitor from a good private lab like Medichecks and Blue Horizon.

The cholesterol thing is interesting….. you are coming at it from checking lipids when people are diagnosed with hypothyroidism, but it may or may not surprise you (depending on your experience) to know probably more people are stuffed on statins before being diagnosed with hypothyroidism. Concerning when you consider the implications. As an aside people suffering from symptoms of depression are put on antidepressants before diagnosis (FREQUENTLY). I was diagnosed with depression anxiety disorder when I presented to the doctor saying I think I have hypothyroidism as I have several symptoms. She did humour me and give me a blood test and thankfully the TSH was high enough and my free T4 low enough that she couldn’t ignore it, but that said some ignorant Doctors do not treat people until that TSH reaches 10 or above, which is horrendous.

The elevated cholesterol link to untreated or poorly managed hypothyroidism is in the NICE guidelines, yet many doctors are not seemingly aware. I do think the cross referencing could be more robust. Big red letters perhaps a few stars and hyper links.

So if you Google ‘hypothyroidism and cholesterol’ should bring up the relevant section in the results list. I’m off to find them myself- I need to put them on my reference list. I’ll add them on another rely later.

Fairflow profile image
Fairflow in reply to Charlie-Farley

thanks for that C-F! Yes I plan to read up on this site, congratulations all you admins on this resource. Wish I'd found it earlier! Actually my cholesterol levels didn't reduce much when I went on the levothyroxine. They are still somewhat elevated even after the 25 years and I am getting more pressure to take statins (coming from that chart relating age to LDL+HDL levels and statin recommendation) now that I'm older. I'm experimenting with plant sterols and resveratrol. We have the good fortune to have an excellent diet as we grow nearly all our own veg organically and have access to local produce in the form of eggs and other foods.

greygoose profile image
greygoose in reply to Fairflow

If your cholesterol didn't reduce with levo, it possibly means that you don't convert T4 to T3 very well, and that your FT3 is still too low. Do you ever get that tested?

But, you do know that you don't need to reduce your cholesterol, don't you? It's not doing you any harm. It doesn't cause heart attacks or strokes as doctors claim. Your body needs cholesterol - in fact, it's very much made of cholesterol. It just builds up in the blood because without enough T3, the body cannot process it very well, and take it where it needs to go. Cholesterol is not the enemy.

Charlie-Farley profile image
Charlie-Farley

Doh!

I had already included it in a previous post. This is pinned as is   tattybogle post on TSH very useful 🤗

Mine

healthunlocked.com/thyroidu...

Tatty’s post

healthunlocked.com/thyroidu...

humanbean profile image
humanbean

if the water is cold enough, I get a furious skin itch over most of my body after the cold; it lasts about 10 minutes and goes when I warm up again.

I would be wary about this. Have you ever heard of "cold urticaria"?

en.wikipedia.org/wiki/Cold_...

I don't know how often this happens, but some people can become dangerously allergic to cold water in the same way that some people can become allergic to bee and wasp stings. The switch from getting just the itch to going into anaphylactic shock can occur without warning.

It might be worth discussing this with your doctor. The section on Drugs for cold urticaria in the wikipedia link above mentions a few possible drugs you can take, and you might need to have access to an Epipen.

Fairflow profile image
Fairflow in reply to humanbean

Oh, that's very interesting thank you. My reaction though quite immediate is not severe but I'll be mindful of the possibility of more severe reactions. I may also try something like Claritin before any cold immersion to see if it makes any difference. Cheers.

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