Update on Total Thyroidectomy last February.

[Flowerpower_nafas]

After my TT last February I have had numerous problems related to it, especially being Hypoparathyroidism and treated with ongoing calcium & vitamin d. I have also been taking vit b12. I had posted my symptoms of tingling/numbness of hands/feet and body tremors and Clutter answered my query saying that 125mg of Levothyroxin seemed to be too low. My GP has now raised it to 150mg and wants to get it higher over a period. She is listening to me as another GP is. The Consultant at Hospital is not and wanted to keep me on 100mg.

Yesterday I felt better but later in day after severe pain behind my knee, I was diagnosed with a Baker's cyst.

Two questions: anyone else have this and can it be thyroid related?

Can you overdose on vit b12? I read that too much can cause blood clots and it does appear that it can be a complication to a Baker's cyst. My homeopathic Doctor says it is highly unlikely you can overdose on vit b12 but I would like to hear from anyone with these problems ie: Baker's cyst and too high vitamin b12.

It's been an awful 7 months, I know many of you have suffered much longer. I'm due to see GP again tomorrow about cyst.

I am terrified of a blood clot forming & also had some mild chest pains accompanied by bring up wind. Anxious doesn't describe it!

Any help or advice would be most welcome.

Thank you

Valerie x

[Clutter]

Valerie, I'm sorry you're still having a rotten time. Your naturopath is right, you can't overdose on B12 as any excess is excreted. There doesn't seem much point in supplementing B12 if your levels are at the top or over range as you will just be wasting money and peeing the supplement out.

I haven't heard of any connection between thyroid and Baker's cyst or high B12 and Baker's cyst or blood clots. My aunt had her Baker's cyst drained a couple of times which helped her.

Your chest pains may be due to indigestion, especially as you are having wind. Raw apple cider vinegar with 1/4 to 1/2 tsp of bicarbonate of soda is a good indigestion remedy.

If your TSH is still high it may be that your anxiety is a symptom of undermedication. If you get your thyroid and vitamins blood tests from your GP tomorrow and post them with the lab ref ranges members will comment/advise.

[Flowerpower_nafas in reply to Clutter]

Thank you again Clutter for your advice. My THS is 21.5, FT4 16.5. Not due another test until 2 weeks. Calcium three weeks ago was 3.1, should be no greater than 2.6. But I still have to be on calcium as parathyroids are only working at 0.6, minimum should be 1.6. Taking 2 x 500 daily. Vitamin B12 was high 658, no greater than 695, although Japan recommend up to 1000. Vitamin D is now 35, should be higher up to 65 to be in mid range, was non existent in February. Taking 2 x 1000 daily. Will get other levels from Dr tomorrow. Levothyroxin now 150 from today. I even felt better after one dose! Is that normal? Or just wishful thinking now that meds have been raised!

Also taking 250mg of magnesium and same of serotonin as not sleeping well. I take 250mg zinc twice a week. Should I add vitamin C?

I am freezing cold all day, and boiling hot all night.

What was supposed to be a life enhancing operation has turned out to be anything but. I am also seeing an Endocrinologist next week so may have further news then......hopefully.

Thanks again

Valerie x

[Clutter in reply to Flowerpower_nafas]

Valerie, your TSH is still far too high although your FT4 isn't too bad considering. It would be very helpful if your GP would test FT3 as this would give a good picture of how much T3 you're converting. Your GP is right to increase your Levothyroxine and is looking after you better than the consultant. I really don't understand your consultant's rationale for keeping you on 100mcg.

B12 ranges in the UK usually top off at 900-1100 so you are good in range but can continue supplementing until you are top of the range.

I think you may need more daily D3 but am loathe to advise you to increase because of how it may affect your calcium due to hypoparathyroidism. This is something else that needs overseeing by an endocrinologist.

I'm very in favour of supplementing vitamin C. Most fruit and veg are low in C due to being picked before they are ripe.

It usually takes 7/10 days to feel any benefit from increase/decrease in Levothyroxine but some people are more sensitive than others and do notice more quickly. If it is placebo effect that's made you feel better just enjoy and hope it lasts

[faith63 in reply to Flowerpower_nafas]

I heard about someone on another forum, that has a high TSH like that all the time, do to pituitary issues, The TSH is ignored and they dose according to ft4, ft3 and symptoms.

[Flowerpower_nafas in reply to faith63]

Thank you Faith63. Good facts. Yes it's waiting for Pit gland to realise I don't have a thyroid and parathyroids not working. Been told it will take up to 2 years. I'm collecting facts and putting into a book for easy reference. It's all so complicated.

Thanks for responding. X

[faith63 in reply to Flowerpower_nafas]

My TSH stays low all the time now and it happened fast. Will they do an MRI or further Pituitary tests? I pray the do the right tests and treat correctly. Yes, keep track of everything.

[faith63 in reply to faith63]

I mean keep track of labs, symptoms, everything.

[Flowerpower_nafas in reply to faith63]

My problem was/is they shouldn't have operated due to v v low calcium & vit d levels. I went hypo calceamic within 12 hours of op and this happened three more times. I was in hospital for 2 weeks. This has hindered my progress. X I don't know what they will do, I obviously need higher Levothyroxin but consultant & GP don't agree on treatment. Consultant would still have me on 100mg daily. TSH came down to 12.5 at end of May & now gone up again. It's a mystery.

[faith63 in reply to Flowerpower_nafas]

May i ask why your thyroid was removed?

So your calcium was low before the surgery? I hear surgery can damage the parathyroids and it seems to be a pretty common occurrence.

Vitamin d gets low from autoimmune disease..they absorption seems to not be so good. Mine was 14 when i first got tested.

If you feel unwell and can't get help, many people are self medicating.

[Flowerpower_nafas in reply to faith63]

I had two huge benign nodules growing around my vocal chords and down into my chest cavity, had to come out. He saved my voice thank goodness as it's my job. But thought he had left 3 of 4 parathyroid glands but they are not working. Vit d was non existent I was told and v low calcium. Vit d now 47. Taken 7 months to get that, needs to be much higher.

X

[Margo]

After a tt ten years ago I had all the problems you have mentioned. I have b12 injections every month, it is not possible to over-dose, and just because your numbers are high, doesn't mean it is all getting in the cells. I have more than 2000 B12, and still suffer fatigue. I also take Liothyronine as everything else did nothing for me. Ten years on things are better but still not perfect. If I can help any more please p.m. ne.

Good luck!

[Flowerpower_nafas in reply to Margo]

Hi Margo. Thank you for your reply. I know at my age 68, recovery is not easy especially as I had my gallbladder removed last year, so two major ops has taken its toll. I'm a busy professional person and due to travel to Oman and India in the next 8/9 months so I need to improve my health as soon as I can. I don't know how to do a private message on here. Is there a trick I am missing?

Thank you

Valerie x

[Margo]

I had a gall bladder removal and other serious ops', I am 62 we are still young Valerie.

To private message, tap onto my photo, and it invites you to message.

Good luck

[faith63]

Chest pains with burping is just air/gas. Could the tingling be from low Calcium? I have not heard of over dosing on b12 and blood clots..i wouldn't worry about that at all. If you are undermedicated/overmedicated, i swear anything can happen. I have different parts of my body act up depending on my dose. I feel like no doctor takes this seriously at all.

[Flowerpower_nafas]

Two of my GP's are being super, one doesn't have a thyroid himself so understands the issues. Yes everything changes on a day to day basis, so annoying and depressing.

My calcium is too high at moment but can produce same symptoms.

Hoping to see Endo next week.

Xx

[Flowerpower_nafas]

Hi everyone

Thanks for messages & encouragement. My saga continues!

My GP has raised my Levo to 150 as she agrees with comments from Clutter that I am severely under medicated. Have ben on it for 2 weeks & started to feel lots better.

I had an app with ENT Surgeon that was supposed to be with an Endo as well, but she was ill and I was just given her notes on my blood tests. She noted that my calcium had gone sky high 3.1 and said symptoms of numbness in head, toes, feet & hands, tingling and internal tremors/shaking were due to that. So my calcium & Vitamin D have ben reduced to one a day. (500mcg)

I had a few really good days, felt much better, tiredness gone but woke Saturday morning with the dreaded tremors back and they have got worse over 3 days.

I am concerned that all my collective symptoms, numbness, shaking & tremors, eye sight deteriorating with some blurring ( had eyes tested last May, deteriorated by 2 levels so new reading glasses), muscle & bone pain ( waiting for test for arthritis as Ultra sound showed left leg clear of clots & Baker's Cyst), is this all symptomatic of MS? I'm so confused with symptoms coming & going.

I'm now going to get referral to private Endo, but all these appointments are time and I am so depressed & anxious.

Do many people, after a TT, parathyroids not working, go onto develop MS.

I'm due a blood test this Thursday & will post results as soon as I have them.

Any further thoughts welcome.

Valerie x