Chronic Hashimotos and long term side effects

[HeartofApple]

Hi,

I was diagnosed with Hashimotos 41 years ago after 6 years of feeling awful. A locum GP spotted a goitre in my throat as I was talking to him. I have been on 100 mcg of Thyroxine ever since.

Now I am 66 . I have always suffered from hypoglycaemia-type symptoms after any type of exercise (even pushing a shopping trolley!) but it is getting so much worse. My blood sugar remains in the normal range during these episodes. I have had a diagnosis of ‘Idiopathic Post Prandial Syndrome’ from a diabetic consultant and I manage the condition using frequent small, low carb meals and taking a glucose tablet before and during exercise.

My hypo symptoms can be severe, particularly on mood, if I get this balance wrong.

I have been told that this IPS condition is rare but I don’t believe this. I believe it is just not researched or understood or even known about.

I would like to know whether there are any other sufferers of Hashimotos who also experience hypoglycaemias symptoms (every day of their lives, not just occasionally) ? I would like to get to the bottom of this as it has been tough going and if we can find links, we may be able to raise its profile and get it understood and properly treated for all.

Thank you.

[Buddy195 Administrator]

Welcome to the forum HeartofApple

So we can offer better advice, can you share your blood test results (with ranges in brackets) for:

TSH

FT3

FT

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

I, like many members here, had many adverse physical and mental symptoms of hypothyroidism until both my thyroid medication and key vitamins were optimal (and please remember that optimal means right for you, not simply ‘normal’ or ‘within range’ that is sufficient for most GPs!)

Keep posting; we are a friendly and supportive group! 🦋

[SlowDragon Administrator]

Are you testing correctly

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Do you always get same brand of Levo at each prescription

As you have Hashimoto’s it’s extremely common to have low vitamin levels

Essential to test vitamin D, folate, ferritin and B12 at least annually

Are you currently taking any vitamin supplements

We must have good vitamin levels for good conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

Very common for conversion of Ft4 to Ft3 to get worse the longer we are on levothyroxine and after menopause

Are you on strictly gluten free or dairy free diet?

[Hectorsmum2]

I used to get a lot of hypos with blood sugar remaining normal. Sometimes I would have a hypo that would not get better no matter who many biscuits I ate. Better thyroid care had helped but the main trigger for me was caffeine. I cannot even have decaff tea or coffee as that still contains traces of caffeine. I have also found it helpful to be on a diet free of refined sugar and high in protein.

[McPammy]

I use to think I had sugar level issues. It turned out my T3 was far too low. Check your T3 along side T4 and TSH levels. If GP won’t do it try monitor my health on line. Since I combined T3 med with my levothyroxine I’ve not had any issues.

[Itchynose]

Hi HeartofApple

I’ve had precisely the same for the past 4 years . All my blood glucose tests come back « « within normal range « also triglycerides although on one occasion my Medicin Traitant did a finger prick test in his office , raised an eyebrow & sent me for another blood glucose test - again normal. I’ve therefore not been referred to a diabetic specialist.

Only test that remains raised is ferritin which is coming down from its high of 375 and is now 295 ug/L (lab range 15-150). My kidney function is showing as slightly diminished .

I too have Hashimoto’s - diagnosed about 16 years ago though no goitre that know of - I don’t see an endocrinologist here - again because bloods all in range.

I’m 67 - 68 next month . My symptoms all started about 4 years ago when I had to come off Armour thyroid (which I was doing well on) possibly because my supply ran out a year after we moved to France . Armour isn’t allowed here - doctors are forbidden to prescribe it . So I’m on half a tablet a day of Euthyral - which is Levothyroxine and liothyronine in a very low dose .

My thyroid blood tests all come back within range although Free T4 is just on the minimum at 12pmol/L (lab range 12.0-21.9).

My symptoms used to wake me at night initially - sweating , dizziness , nausea and palpitations. Plus sometimes a feeling of doom which was awful. I now get them less frequently at night but have started getting them by day plus feeling tired beyond fatigue . My hair has been falling out for the past year and I reckon has lost half its volume. I’ve put on 3kg since December but I really have not « over indulged “. In fact the opposite as had a really bad vomiting bug last Monday and haven’t eaten much since.

Small frequent meals and plenty of water seem to help the feeling of hypoglycaemia . My médecin traitant has arranged a myriad of tests over the past 4 years including CT and ultrasound scans, cardiac monitoring , fibroscopy and numerous blood tests but so far nothing in the way of diagnosis has been forthcoming. His current thinking is it may be an inner ear issue so I’ve to see an ear specialist at the end of this month . I’ve a feeling that’ll be a dead end too. 🤦‍♀️

Good luck with finding an answer . 🥰

[gabkad]

uptodate.com/contents/hered....

diabetes.org.uk/diabetes-th....

You need to get a full iron panel done to check for hemochromatosis.

[jillyana]

I have Hashimotos as well. I self medicate with thyroid S. I had a couple of very severe feelings of low blood sugar, but my blood was normal when tested for diabetes. I have to eat meals on a very regular basis, if I get very hungry, my symptoms are dreadful. I feel faint, don't recognise where I am, even when I'm somewhere I definitely know & feel extremely spaced out. I find that high protein meals help to keep me feeling okay. If I go for a long walk & feel hungry, I feel ill. I tend to carry high protein bars with me if I'm going to be late eating, as this is the only way I can stop feeling dizzy & faint.