Help Please.

[Capri71]

I am getting very confused when researching so looking for support please.

I had a Total Thyroidectomy in 2009. Currently I am on Levothyroxine 200mcg, which I now take at night. I am 47 yet feel like Im 87!

Recent blood results = iron 29. (9.0-30.4)

TSH 0.83 (0.35-3.5)

FT3 4.4 (3.8-6.0)

FT4 18 (8.0-21.0)

Ferritin 57 (23-300)

Folate 4.1 (2.7-15)

B12 382 (130-1100)

Vit D 33 (50-120)

Symptoms = Tiredness/fatigue, blurred vision, watery eyes, painful eyes on movement, bright light hurts my eyes and useless at seeing at night, headaches. Extreme mood swings, aches and pains, chest pains, palpitations, dizzy, clumsy, confusion and brain fog. Tremors in hands, insomnia, loss of libido, occasional night sweats, PMT, periods either 2 or 3 weeks apart, poor appetite, tearful and I hate being around people!

I am not overweight, I recently lost weight over the last year (around 2 stone)(without trying) - weight around 9st.

Recently attended consultant to have eye's checked and its not TED but have talked about a fushion/eye convergence and have said my eyes are about 20 yrs older than I am??

I constantly have a fast pulse (I have done since I had the thyroidectomy) and I tend to be around 100-120bpm. (would this indicate too much Levo?)

ECG and checks all normal.

So following previous advise I have commenced on Vitamin D protocol. I have on order the required vitamins and Vitamin B12 (to be started this week hopefully).

I have frequently asked my GP about T3 or NDT with no luck. She really does not understand thyroid at all and is constantly trying to put me on anti-depressants.

I have asked for endo referral but not getting anywhere and currently I can not afford to go privately.

I have obtained some T3 but I am unsure that if my heart rate is fast now would that put me at risk?

All the research seems to treat according to conditions ie Graves or Hashi.. is this still relevant to someone who does not have a thyroid?

I am currently not at work, mostly due to not feeling safe driving at mo along with fatigue/emotional state.

Sorry for the lengthy post.. Im not even sure what Im asking for but I really feel like I need some support or guidance on how to feel well again.

Thankyou

[Nanaedake]

Ferritin, folate and vitamin D are all too low. For thyroid hormone to work well, whether that be our own hormone or tablets we need our vitamin levels to be mid range at least and B12 might be best near the top of the range.

What happened to your parathyroid glands during thyroidectomy? Did they recover fully? Have you been prescribed vitamin D and calcium by your doctors? Have your doctors considered calcium deficiency that does not show in blood tests? Vision can be affected by low calcium levels.

This article explains how some nutrient deficiencies can cause a number of symptoms and links calcium deficiency to thyroid disease. news-medical.net/health/Cal...

This article suggests a link between low calcium and anxiety.

tranquilitylabs.com/calcium...

whittington.nhs.uk/document...

[Capri71 in reply to Nanaedake]

I will read these - Thankyou.

Unfortunately I feel I'm on my own as GP won't listen and isn't helpful. Wouldn't even prescribe anything for Vit d as feels at that level couldn't possibly have symptoms.

I actually do not know about para thyroid ? Would that say on my health record? I had a multi modular goitre which had grown into my neck space and sternum my operation took around 10 hours!

I do know about effects from vitamins and have ordered everything I need.

I'm just at a loss of which way to turn as I feel so rubbish.

[Nanaedake in reply to Capri71]

You should be able to get a copy of your pathology report which should indicate whether there was any parathyroid tissue in the part of the thyroid removed. I was told you only need one parathyroid gland to fully function but apparantly not as I've found out to my cost. I would ask doctor to give you a copy of your pathology report and check what it says about parathyroid or get a copy from your hospital. I ended up asking for a second opinion, you might be able to do that too. Your doctor might have no idea that calcium deficiency is connected to thyroid disease as none of mine did despite 7 years of symptoms back and forth to doctors and 2 Endos. They really are not clued up on thyroid disease at all!!

One thing you could try is making sure you have some calcium rich food at every meal. Read up on calcium rich foods but remember that oxalic acid and phytic acid interferes with calcium absorption so eat those food separately from your calcium rich foods. ou also need good fats to absorb calcium apparently. If you had a small bowl of yogurt in between meals you could get extra calcium or hard cheese or fish with the bones in such as sardines with the bones or pink salmon with the bones. If you start feeling better you might conclude you need to increase calcium in your diet. I try to keep my vitamin D about mid-range or around 110nmol. The vitamin D council website has good information. If your doctor thinks being under range is OK then what's the point in having ranges???

I also take vitamin K2-MK7, magnesium and K2 rich foods and 6-10 prunes each day which contain boron and K2 which are needed for building bone. I make my own kefir. According to information on the net 170mls of kefir contains 20% of recommended daily allowance of calcium and a whole lot of other nutrients as well as being good for the stomach. I make kefir from only organic whole milk from grass fed cattle as I believe there are more nutrients in the milk from pastured cows. It could be all a myth but in the meantime it's helping out our local dairy.

If you are menopausal or post menopausal a drop in eostrogen makes it difficult for our bodies to absorb calcium and if without a thyroid we lack calcitonin too so it may compound the problem. There is little scientific research on the role of calcitonin and so doctors don't advise us and probably have no clue. Do your own research and eating extra calcium in your diet for a few months might clarify whether that's the problem or not.

I can't advise on T3 as I've never taken it but you could do another post as your post above is quite long that question might have got lost.

[Capri71]

Thank you. Yes was very long post 😊 I think I'm just feeling so rubbish just not sure which way to turn.

I'll keep working on vitamins

[Nanaedake]

Do be persistent with GP and ask them to check everything out thoroughly. They do not pursue your symptoms unless you insist and there may be a physical cause that is not directly your thyroid. If you don't feel well you need to find out why. Anti-depressants are not the answer. Point out to the GP that the NICE website states osteoporosis is a side effect of antidepressants and you are already at risk having lost your thyroid. Insist GP explores all possibilities with referrals if necessary.