What gives.

[WadingWillow]

I’m a 35 year old, mother of three and recently diagnosed with hypothyroidism. I’m 5’1 and 94lbs. Most of my issues don’t meet the normal “look” and went for years being told I was tired because I have kids, stressed because of life, I’m small and look fine so I may have just had a bad draw... oh. I’ve heard it all at this point. I also have PCOS, a heart murmur with a-fib and factor5. It seems like this particular combination makes things tricky to treat— most birth control to treat the PCOS is a no go (due to the factor5) and treating the thyroid with the heart issue (and keeping my weight up) has also been slow going. They started me with 25mcg then 50mcg of levothroxine, which hasn’t changed my numbers enough but, has decreased my appetite and my doctor wasn’t thrilled with my last eco. It sounds like a long list of issues and I guess it is but, I am really in need of some relief. It’s taken me YEARS to get this last diagnosis and I’m really at my wits end. Anxiety, depression, hair loss, brain fog, fatigue, heavy and inconsistent cycles, you name it, this list is long. I guess I’m really just wondering if there is a light at the end of the tunnel. I do have a great doctor now (after many, many super crappy ones) who caught this after only my first appointment (he saw a very steady decline in my numbers from years of labs) and I have faith in him, I’m just frustrated. Because I’m underweight(ish?), this and the PCOS were brushed off for a very long time— I’m super appreciative that my most experience was different. I’m ready to feel like a human and wonder if I even know what that is at this point. I know this is a fairly specific situation but, SOMEONE has to have dealt with less than straightforward treatment plan and I’d love to know what that may have looked like. Many thanks.

[Maggie0652]

Hi. Have you got any blood test results you can share? We’d need the numbers and ranges to comment as different labs have different ranges. You have a legal right to copies of all of your blood test results so if you haven’t got them you can request them from your doctor.

In most cases, thyroid issues also cause problems with the gut and this prevents absorption of essential nutrients which could be an explanation for your low weight. Often a gluten free diet can help with this even for people we have tested negative for coeliac disease.

Ideally, your doctor should test tsh, free t4 and free T3 as a minimum but also, antibodies TPOab and TGab, vit d, vit b12, folate and ferritin.

If your doctor refuses to test any of these you can get private testing done through Medichecks or Blue Horizon.

thyroiduk.org.uk/tuk/testin...

This is a link to the info about testing on the thyroid UK website.

Margaret

[Gilbo72]

Hi, I am 5ft3 and weighed about 7st and was 29 when I was diagnosed with PCOS. My periods actually stopped, I thought it was because I was underweight but my GP picked up on it and sent me to the fertility clinic, where they found I had polycystic ovaries and started me on a week of Clomid, voila 2 pregnancies later and then I started to get Hypothyroid symptoms at about 34 years. At this point I weighed about 8st. The same GP picked up on it and treated me with thyroxine which was a big improvement. Sadly I moved house and so GP too. My new GP took one look at me and said there was no way I could be hypothyroid, (I guess coz I didn't look the norm). He mucked around for several years while I slowly put on weight and got iller. I now weigh 9.5 stone and am in my 40s. But I am being treated again for hypothyroidism.

When I was at the fertility clinic they told me that whatever I was doing, keep doing it (ie eat healthy, exercise), and that I was a lucky PCOS sufferer as I was so small. To be honest I forget I have PCOS and for me know, my problems are all about the thyroid and vitamin levels. The nurse did say as you get older PCOS may cause more problems but it is a 'syndrome' rather than a progressive disease, so it can be managed with lifestyle. Your symptoms sound like hypothyroidism not PCOs related. I don't have any classic PCOS symptoms, minimal acne and facial hair occasionally! My periods are pretty heavy and weird now, but that is down to my hypothyroidism not PCOs. I started on 50mcg when I was first treated – 100mcg was better, but my tsh was supressed and T4 really high. I am now on 150mcg...

Sorry I can't help with the heart murmur and or factor5/a-fib (what is that?). But having said that, you have just reminded me that a doctor did once mention I had a heart murmur to me!! (maybe I should investigate, but he did give me the impression it wasn't a huge problem and quite common, so I had forgotten about that.) Nobody else has ever mentioned it again – probably because nobody ever seems to examine anymore!

Sounds like you are on he right track. Good luck!

[SlowDragon Administrator in reply to Gilbo72]

Mitral valve prolapse (MVP) is extremely common with autoimmune thyroid disease

verywellhealth.com/mitral-v...

webmd.com/heart/news/199911...

annals.org/aim/article-abst...

[humanbean]

You could do some research into PCOS and a low carb, moderate protein, higher fat diet. Apparently the symptoms can be reversed :

dietdoctor.com/low-carb/ben...

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Regarding heavy, irregular periods, this is common in people with low iron and ferritin. By optimising iron and ferritin you can lighten your periods and might reduce pain too. Low iron/ferritin can also increase the risk of anxiety, depression, fatigue and brain fog. Also, the heart is sensitive to low iron and ferritin, and if the problem gets bad enough it can cause chest pain and heart arrhythmia that can be mistaken for a heart attack.

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Heart problems are common in people with hypothyroidism. Low levels of T3 (one of the thyroid hormones that is created by the thyroid and is also created throughout the body by conversion from T4) are particularly bad. Your dose of 50mcg Levo per day is a very low dose that is unlikely to be enough for many people. Levo is synthetic T4. With insufficient levels of T4 your body doesn't have sufficient raw materials to make enough T3.

[humanbean]

Are you in the US?

If you are, are you aware that you can get blood tests done without involving doctors or insurance companies?

There are some companies that do this listed on this link :

stopthethyroidmadness.com/r...

It does depend on which state you live in though.