I had a TT 3 months ago. I have so many aches and pains especially knees and lower legs. I can not even go for my walk anymore. I Help.

[E67123]

I am on synthroid 125. Could it be the kind of thyroid.

[Jackie]

Hi It is thyroid treatment, for hypo. It is normal to need some after the surgery too. It sounds as if you need re tests of TSH, T4 and Free T3 to check the levels You may need some T3 also, only the levels of them all will tell you taht. Always ask for a print out with the ranges, receptionist, GP or sec, at hospital. Ranges vary ,so vital.

. Also in particular vit D, hormonal,If this is low, you need a test for corrected calcium before any treatment. Re test after 3-4 months when D is working, and especially to check the calcium again.

There are other tests too. You should have had them, if OK need repeating every year any way. Diabetes, B12 + foliates ( should be high in range), These are both autoimmune , hormonal, also iron/ferritin which needs to be clearly in range.

I none of these, it may be Arthritis in which case, ask to see a good, rheumatologist.( autoimmune too)

Best wishes,

Jackie

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[Townplanner]

I had a TT and experienced aches and pains which went away after taking T3! My doctor tested for arthritis but all I needed was T3!

[Horbs]

Hi I had a TT in April and was put on 125 mcg of Levo. I complained of tiredness and fatigue but was told my body needed time to adjust to the meds. 3 months later my TSH was very elevated (over 100) and my T4 was very low so surgeon increased Levo to 150. Several blood tests later I'm now on 200 per day of Levo but still don't feel right. Pains in my knee joints and muscle cramps in my lower legs got so bad that I couldn't walk very far due to constant pain and I constantly woke up with cramp. Surgeon and Endo both stated that the tiredness and pain were classic signs of hypothyroidism.

[shaws Administrator in reply to Horbs]

The 'classic signs' should go with proper thyroid medication at an optimum level for you. I didn't have a TT and had the excrutiating pains on levo as well as palpitations and feeling constantly unwell.

The more I reduced the T4 the better I became on T3.

This is a link for information. It is nearly impossible in the UK to find an Endo who is willing to prescribe alternative thyroid medication:-

web.archive.org/web/2010073...

[Hidden]

Hi

I had a TT two years ago and it's been and still is a total nightmare. Yes it probably is the type of thyroid you are on. I'd suggest reading Stop the Thyroid Madness website and Dr Peatfield's book Your Thyroid And How to Keep it Healthy. Also you need a full iron panel and a cortisol saliva test (your doc won't help with the latter but you can get yourself). My first suggestion is remove gluten (and ideally grains, ie Paleo) from your diet. This can make a massive difference.

Vits and minerals are crucial - B12 needs to be over range, D3 about 80, ferritin around 100, candida needs to be dealt with, and gut dysbiosis, sex hormones can all create havoc, most of us have digestive issues and need digestive aids. Electrolyte balance can be very hard after TT - you need to be getting enough unprocessed salt and using a very good quality multimineral to keep potassium levels topped up.

Personally I'd get copies of your results and post them on here - it's your blood so they are your results. They should be routinely testing TSH, FT4 and FT3 - and you need a T4 two thirds in the range and a T3 at the top or just over the top of range. In your shoes I'd also increase my own dose and then inform the doctor you've done it. TT is not like being hypO - its far more serious and you can get viciously hypo very quickly. But aches and pains, carpal tunnel pain, sore soles of feet etc is usually low T3. If your body can convert, then increasing the levo might help. If not then as others have said, you might need T3 - however British NHS T3 is a load of crappy rubbish and that's making people sick as well.

Why did you have a TT incidentally? Do you have autoimmune thyroid disease? Did you have any other treatment (eg. iodine treatment for thyroid cancer)?

It is possible to get your health back but most TT patients don't thrive on one synthetic storage hormone .....and life after TT is a very tricky juggling act. But it can be done. But I'd not sit around waiting for an 'expert' to come and help. My surgeon told me (after) that they don't even yet fully understand the thyroid and all the hormones it makes and jobs it does, so they don't really understand all the implications of cutting it out of our bodies!

In japan they are starting to transplant them (that nuclear disaster is wiping out thyroids) and research is starting to grow new thyroids from stem cells. Roll on that happy day ....

Best of luck

Rebecca

x

[cass88 in reply to Hidden]

you seem well informed,so perhaps you can help me. i had a tt two years ago. health has deteriorated since then and not been easy. some months ago i was told i have high cholesterol, and rather than take statins i opted for a change of diet. i've been eating little but grains and cereals, and been feeing very ill and disabled by aches and pains. having read your post i was wondering if there's a connection.? also is there's a good diet to follow that would help with hypo symptoms.

[Hidden in reply to cass88]

Hi there - your symptoms sound like hypothyroidism ... are you on T4 only, what are your blood results like, do you feel well on the drugs? I'm just a few months into switching to Westhroid P (natural thyroid) and adrenal support and doing lots better. Food intolerances can be related to adrenal fatigue (cortisol is anti-inflammatory) so sorting out adrenals can help that. But I eat a Paleo diet - no grains at all, no sugar or processed carbs. I did the Autoimmune Paleo diet for a long time - you'll find it if you google it. But digestion and gut issues can be due to poor absorption so using digestive enzymes and betaine HCL can help as can mother cider vinegar - many of us have heartburn type symptoms but it's actually not enough instead of too much acid. High cholesterol is a hypo symptom - as your thyroid levels come up your cholestrol will come down. If your doc is dosing you by the TSH then that's no good, you need a doc to go by the frees. Also most of us with autoimmune thyroid disease (just because the thyroid is gone doesn't mean the 'disease' is gone) need to avoid gluten very strictly. Low iron, low B12, low vit D, vits and minerals can all make you feel hypo and also make you feel 'psuedo or false hyper' symptoms if you try to raise your meds. Electrolytes are really important - making sure you get enough unprocessed, gray salt and potassium (a good multimineral with potassium in it would be fine) and enough magnesium can also make the world of difference. Epsom salt baths would really help. Finally making sure you get some good fats into you like virgin olive oil and coconut oil will help. Being thyroidless if very serious - most of us don't thrive on levothyroxine and either need T4/T3 combo or natural and it's a constant juggling act keeping everything balanced.

Best of luck

Rebecca

[debjs]

I agree with Girlscout. I have found that you have to take responsibility for your blood test results and sometimes argue your case . I kept a diary of symptoms and how they correlated to my blood results and have discovered that I am very unwell if my calcium drops to the lower end of the range. Also my B12 levels were very low which did not help. You will probably have to request for these to be tested. The Dr I have been seeing privately says that most people who have TT end up needing some form of T3.

Good luck.

[cass88]

i have an app. today with my gp. thought blood test results would lead to higher levothyroxine dosage as i've had so many hypo symptoms . unexpectedly called yesterday by receptionist at surgery who said test results were in and showed i must reduce dose from 125m to 100m. surely this would imply they think i'm hyper? i feel i'm going to have to do battle when i see doc.

i've printed out a list of my symptoms to leave with her, so they can't be dismissed , and will submit test results here as soon as i have them. will ask about t3 and natural ths and to be referred to an endo. but will go to a private one in the meantime and have her write me a letter confirming i'm not fit to travel. ( i'd booked a holiday to the middle east at xmas,before hyper symptoms got impossible) just posting this now because anxiety is rising about dealing with all this c..p .