22 year old wondering if all my problems are th... - Thyroid UK

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22 year old wondering if all my problems are thyroid related?

liaratsoni profile image
7 Replies

Hi everyone!

I hope it's ok to post this kind of thing here but I wondered if my story registers as something that could be related to a thyroid condition. This will be a long one!

I am a 22 year old woman who has suffered increasingly ill health over the last few years. A few years ago I had very strange almost hypoglycemic/low blood pressure periods where I would suddenly get very hot then lose my vision to dark and fall depsite remaining conscious. Back in 2017 I started losing my periods and was discovered to have PCOS. I was also discovered to have low white cells and neutrophils and referred to hematology. It was also discovered at this time I had severe iron deficiency anemia - my ferritin was 3ug/L! and a b12 level under normal. I was treated for the iron but not the b12 and got progressively worse after with my iron only rising to 24ug/L after 3 months of super high dose supplement. Fast forward to this year after suffering increasingly with worsening fatigue, a doctor baffling bout of oral thrush and worsening digestive issues it got to the point where in may I looked and felt like a zombie - I was laying on the sofa all day unable to perform basic tasks and with a range of symptoms including: extreme fatigue, inability to exercise due to breathlessness and dizziness when trying, heart racing and breathlessness climbing one set of stairs, forgetting names of objects/things, tinnitus, yellowed skin, lightheadedness and unsteadiness in darkened conditions, restless legs, vision disturbances - blurred vision and difficulty focusing, pins and needles, tingling lips and constant tingling in my feet, weakness/loss of hand control when typing/writing, scalloped reddened slightly enlarged tongue, ridged nails, cold hands and feet causing chillblanes in winter, complete loss of periods and severe digestive problems: constipation, soft/undigested food stools, silent reflux causing post nasal drip, burping, farting, severe bloating and suspected low stomach acid - didn't burp at all doing baking soda test and didn't respond to diet changes (far better digestion eating acidic foods) and inability to eat normal sized meals and in particular protein without extreme fullness. I have also as mentioned suffered with extreme cold for years - my hands and feet are always ICE and all summer I have been sleeping with two duvets on. I am freezing cold constantly to the point in winter it's hard to function. I was trialed on b12 injections after a fight to get them for suspected pernicious anemia and they have improved my life dramatically - many of the above symptoms improved or vanished and fatigue is way better though still definitely not normal. I have to self inject once a week as the awful fatigue creeps back if I don't. I also have ongoing low ferritin of 17 (so 2 above minimum and with no blood loss from no periods) and vitamin d deficiency it was 38nmol/L. I am also struggling to eat - I heavily suspect low stomach acid as I can't digest protein well and have to eat small portions and am being tested for SIBO - any attempt to eat more than a tiny amount of starchy carbs cause immediate severe digestive symptoms. I am currently eating about 1000 calories a day (I am 5ft 10 and have a bmr of around 1500 calories so nowehere near enough) but physically can't eat more without fullness and an overload of awful digestive symptoms but also don't feel hungry desite eating 1/2 the calories I should. I am predictably therefore underweight but strangely despite my severely malnourished diet and lack of calories I am not losing weight. My current problems are the much improved but still present fatigue - i can do daily tasks again and don't have to lay on the sofa all day but long periods on my feet or exercise is impossible, the cold extremities and body temperature - I am wrapped in two blankets as I type!, yellow tinged skin - seems to have improved with b12 but still very visible on extremities, mouth ulcers and still mildly scalloped tongue, occasional dry mouth, brittle dry hair, ridged nails, severe digestive problems listed above/silent reflux/pnd, tinnitus, ridged nails, complete loss of periods and libido, strange vision - blurriness and double vision that isn't constant. I am also still continually monitored for my fluctuating neutropenia - always below normal with my other white cells and low complement c3 - my consultant suspects I have an autoimmune disorder but according to a letter from the immunologist he contacted "no one at the hospital has an interest or knowledge in autoimmune disorders"?! so no help there.

I don't know hardly anything about thyroid and differences in hyper/hpyo or autoimmune thryoid problems. I have heard before that like with PA the tests doctors run are frequently insufficient. I have had my tsh tested a few times randomly before but every test has been a different number ranging from 1.4 to 3.1miu/L. I also found out today from my dad that my grandma had thryoid problems and was on medication and had a goiter removed? If anyone can offer any advice or thinks it sounds like something I should pursue I would be incredibly grateful! Thank you!

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7 Replies
jimh111 profile image
jimh111

This could well be hypothyroidism especially with your extreme coldness. How is your skin, is it dry or oily? It would be well worth getting a private blood test done as a first step. At a minimum you need TSH, fT3 and fT4 tested. Some of the other tests like vitamins D and B12 and ferritin you have already. I go to a clinic in Central London which is a bit pricy at around £100 but there are cheaper home finger prick tests which I'm sure someone will mention. Once you have the results we can comment on them.

The only definitive test for hypothyroidism is a trial of thyroid hormone and see if it works. Doctors are very reluctant to conduct this safe, cheap and definitive test! But you may have to really put your foot down and insist. If you have to resort to this make sure you take someone with you to the GP. In the meantime I would arrange a private blood test provided you can afford it. It may be that you are not hypothyroid but it really makes sense to check it out, it would be terrible to miss the diagnosis just because you are told your blood tests are 'normal'.

liaratsoni profile image
liaratsoni in reply tojimh111

Thank you for the response! I hadn't really thought about it before but now you ask my skin is quite dry. If I might ask is hypothyroidism typically genetic and is it a or related to autoimmune disorder? Sorry for my ignorance I know very little about this all! My mum has been tremendously helpful with helping me with private blood tests when the doctors haven't helped so I might be able to get those tests done. Is that £100 for all the tests or just one at that clinic? I am at a loss with the doctors so may just go private straight away - this last year has been a constant fight to be taken seriously. Again thank you so much!

jimh111 profile image
jimh111 in reply toliaratsoni

Just checked the price has gone up to £109.15 bloodtestslondon.com/blood-... . I use this clinic because they use the same lab as my GP and it's near my favourite patesserie! It is quite a rip off as the same lab charges NW London NHS 93p for each of TSH, fT3 and fT4. The 'free' blood taking and 'low price' are nonsense, it's always the same price with occasional offers. Other patients can give you details of cheaper tests that are reliable.

Dry skin was found to be 63.8% specific for hypothyroidism academic.oup.com/jcem/artic... . In plain English if you have dry skin there are two chances out of three that you are hypothyroid. I asked if your skin was dry or oily so as not to bias your reply, hypothyroidism does not produce oily skin.

Hypothyroidism caused by autoimmunity has a strong genetic link. It's not a genetic disorder but if close relatives have autoimmune thyroid disease you are more likely to get it. Given the severity of your symptoms and your normal TSH I suspect that if you are hypothyroid it may not be due to Hashimoto's. It may be due to other reasons and sadly more difficult to persuade a doctor to treat you. Let's see what the blood test results are.

liaratsoni profile image
liaratsoni in reply tojimh111

Thank you again for all the info! I will definitely look into testing!

SlowDragon profile image
SlowDragonAdministrator

First step is to get full Thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Autoimmune thyroid disease often runs in families, so very important to test antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you get results and ranges

liaratsoni profile image
liaratsoni in reply toSlowDragon

Thank you for the wealth of information! I am definitely going to look into testing - I've had a good experience with medichecks. I will get back on here when I do :)

SlowDragon profile image
SlowDragonAdministrator in reply toliaratsoni

Many of us only made progress by getting full private testing

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