Why do I feel so unwell?

[shaldonkoolma]

Sorry for the long post!! I am 53 on Monday, had a total thyroidectomy for Graves in 2004, since then been on 150-200mcg levothyroxine and 10mcg liothyronine.

Currently I am on 200mcg thyroxine and 10mcg T3.

I dont think I have really felt properly well since the thyroidectomy.

However, had AF, and a small stroke in August. Then ablation in September. Was recovering slowly but seeing improvements every couple of weeks.

Went back to work, 4 hours a day for 2 days in January. Supposedly a phased return, but have got stuck at 4 hours.

For the last 3 or 4 weeks I feel I have been going backwards. So very fatigued, a bit light headed, sighing in the mornings, (strange one I know). Weak voice, and some aching joints. Cold hands. If I try to do more than one strenuous thing (ie shopping, driving any distance, any sort of exercise) I am floored for the rest of the day and maybe for a few days after. I cant imagine ever feeling well enough to do any decorating, or gardening at the moment. My daughter has CFS.

Told the Doctor, had blood tests. I was hoping it would be something fixable They suggested I drop my thyroid dose to 175mcg (they wanted to drop it to 150 but I suggested 175, as I have intentionally lost weight in past year. Asked if B12 injection might be worth a try as B12 low end of range but they declined as it is within the range..... They said the ferretin is fine (even though it is out of range)

I just wondered if you clever lovely people had any ideas. Are there any specialists I should see? I am thinking of seeing Dr Rajendra Sharma who is on the list. Seriously considering NDT.....

Thank you in advance

Pathology Investigations

Full blood count

Total white blood count 7.9 10*9/L [4.0 - 10.0]

Red blood cell count 4.48 10*12/L [3.8 - 5.5]

Haemoglobin concentration 133 g/L [120.0 - 150.0]

Haematocrit 0.395 [0.37 - 0.47]

Mean cell volume 88 fL [80.0 - 100.0]

Red blood cell distribution width 12.7 % [0.0 - 16.0]

Mean cell haemoglobin level 29.6 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 336 g/L [280.0 - 350.0]

Platelet count - observation 256 10*9/L [150.0 - 400.0]

Differential white blood cell count

Neutrophil count 3.7 10*9/L [1.8 - 7.5]

Lymphocyte count 3.3 10*9/L [1.0 - 4.0]

Monocyte count - observation 0.5 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.3 10*9/L [0.0 - 0.4]

Basophil count 0.1 10*9/L [0.0 - 0.1]

Serum cholesterol/HDL ratio

Serum cholesterol level 4.6 mmol/L [< 5.0]

Serum HDL cholesterol level 1.89 mmol/L [1.0 - 3.0]

Serum cholesterol/HDL ratio 2.4 [< 4.0]

Serum non high density lipoprotein cholesterol level 2.7 mmol/L

HAEMATINICS

Serum vitamin B12 level 316.9 ng/L [180.0 - 2000.0]

Serum folate level 12.54 ug/L [3.1 - 18.3]

Serum ferritin level 286 ug/L [13.0 - 150.0]

Above high reference limit

Urea and electrolytes

Serum sodium level 139 mmol/L [133.0 - 146.0]

Serum potassium level 4.8 mmol/L [3.5 - 5.3]

Serum creatinine level 61 umol/L [45.0 - 84.0]

Serum urea level 3.9 mmol/L [2.5 - 7.8]

eGFR using creatinine (CKD-EPI) per 1.73 square metres > 90 mL/min [60.0 - 150.0]

New eGFR calculation from 02/10/17.

Values should be multiplied by 1.159

for African-Caribbean patients.

There may be minor changes in reported eGFR

Liver function tests

Serum alanine aminotransferase level 22 IU/L [10.0 - 36.0]

Serum alkaline phosphatase level 68 IU/L [30.0 - 130.0]

Serum total bilirubin level 3 umol/L [0.0 - 21.0]

Serum albumin level 45 g/L [35.0 - 50.0]

AST serum level 22 IU/L [0.0 - 31.0]

Serum total protein level 71 g/L [60.0 - 80.0]

Thyroid function test

Serum TSH level 0.20 mIU/L [0.35 - 4.5]

Below low reference limit

Patient stated to be on thyroxine.

Comment: Optimum TSH for patients on thyroxine is

within the reference range.

Serum free T4 level

Serum free T4 level 23.7 pmol/L [11.0 - 24.0]

Haemoglobin A1c level - IFCC standardised

Haemoglobin A1c level - IFCC standardised 36 mmol/mol [20.0 - 41.0]

Reference range quoted for non-diabetic

individuals. Please see local guidelines for

further interpretation in known diabetes.

When used for diagnosis:

HbA1c 20-41 - normal

[shaws]

I am sorry you are suffering after your thyroidectomy.

My personal opinion is that those who have had this operation should be given - at the very least - a T4/T3 combination but research has shown that a combination is best when it is on a ratio of 3:1 or 4:1. and yours isn't. Your TSH is immaterial when taking thyroid hormone replacements - although it seems to most professionals - that a TSH that is low or very low means we've suddently become hyperthyroid.

Members who have had a TT will also respond when they read your post.

Sometimes we do have to try several options, i.e. T4/T3 or NDTs or T3 alone.

This is a link I posted the other day which you might find helpful. The doctor (Dr Lowe) had an accident and died which was a big loss to the thyroid community. He even resigned his Licence early on so that he couldn't be pursued for helping people to recover their health again.

healthunlocked.com/thyroidu...

[SeasideSusie Remembering]

shaldonkoolma

Serum TSH level 0.20 mIU/L [0.35 - 4.5]

Serum free T4 level 23.7 pmol/L [11.0 - 24.0]

It's possible that this is where your problem lies. Your FT4 is at the very top of the range. You need FT3 testing and I expect you might find this to be out of balance, probably low in range. They should be in balance in the upper part of the range. If your FT3 is low in range then that indicates that you're not converting T4 to T3 well. T3 is the active hormone that every cell in our bodies need, and low T3 causes symptoms. So you need TSH, FT4 and FT3 all tested from the same blood draw.

You GP may not be able to get FT3 tested, the lab makes the decision even when the GP requests it. If this is the case then I suggest that you do what hundreds of us here do and that is a private test from one of our recommended labs, they can be done by fingerprick at home, or for extra cost you can have it done by venous blood draw.

Medichecks and Blue Horizon are both good:

thyroiduk.org/tuk/testing/p...

Serum vitamin B12 level 316.9 ng/L [180.0 - 2000.0] - ng/L is the same as pg/ml

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Also, I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

You can check for signs of B12 deficiency here:

b12deficiency.info/signs-an...

If you have any signs then list them to discuss with your GP and ask for further testing for B12 deficiency/pernicious anaemia. There have been plenty of people with a B12 level in the 300s who have been found to need B12 injections.

Even if you don't have any, you would benefit from supplementing with sublingual methylcobalamin lozenges, 1000mg, along with a good B Complex to balance all the B vitamins.

Serum ferritin level 286 ug/L [13.0 - 150.0]

Raised ferritin can be due to infection or inflammation so it's worth repeating this at some point and if it continues to stay high then maybe your GP should be looking for the cause.

It would be a good idea to test Vit D, many GPs wont do this so if yours wont then you can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/ for £29.

[SlowDragon Administrator]

As you are taking T3 it's essential to test FT3

I would suspect it's too low still. 10mcg is not much.

Do you take your T3 in one dose or as 2 x 5mcg?

Many of us need 3 x 5mcg. Sometimes a bit more

Would recommend getting TSH, FT3 and FT4 tested via Medichecks or Blue Horizon now BEFORE adjusting dose. Otherwise you need to wait 8-10 weeks if reducing Levo down by 25mcg

You might include thyroid antibodies too just to check they are not high. (They should be low after RAI.)

medichecks.com/thyroid-func...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test

Is this how you do your tests?

As SeasideSusie says, you need vitamin D tested - £29

vitamindtest.org.uk

Frequently too low and needs supplementing to at least 80nmol and around 100nmol may be better

Folate is good, but B12 not brilliant

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Keep an eye on high ferritin, you may find it drops if you lower Levothyroxine dose slightly.

Lastly because you had Graves you might consider Changing to a strictly gluten free diet. It can help reduce symptoms.

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

Only make one change at a time or you don't know which is helping

[Marz]

Just a little note about your daughter - has she had all the correct thyroid tests done ? - TSH - FT4 - FT3 and Anti-bodies TPO & Tg. I would have the Private Tests done as detailed in the link from others as the NHS rarely if ever do all the correct ones ... CFS can be LOW T3 too - a hormone that is needed in every one of the trillions and trillions of cells in the body. So if the result is low then there simply is not enough T3 to go around and things begin to go wrong

[pennyannie]

Hello Shaldonkoolma

I was diagnosed with Graves in 2003 and had RAI thyroid ablation in 2005, age 58.

I became very unwell about 4-5 years ago.

I too was never 100 % but thought maybe it was as good as it gets and just tried to soldier on as was told everything was fine, my tsh was ok and I was good to go - but then I could have antidepressants, if I wished ?

Graves is an autoimmune disease and as such it's for life, it's in your blood, your DNA.

There is probably some genetic predisposition and it can come on because of shock to the system like a car accident or a sudden shock.

Your thyroid was the victim of an attack by your antibodies - your thyroid was not the cause of your health issue. Your thyroid went a bit haywire and some of the symptoms caused can be said to be life threatening.

Removal of the thyroid by surgery or ablation is simply swopping on set of symptoms for another, the medical profession believing that they can manage hypothyroidism better than they can manage hyperthyroidism.

Living without a thyroid comes with it's own set of problems, as we have both probably experienced. It's a major gland, the conductor of your whole body synchronisation, it fine tunes everything, mentally, physically, psychologically, and spiritually.

We both do still have Graves, the nature of the disease seems unique to each person.

My Graves does tend to thrive on stress and anxiety and I read it can wax and wane over the years. Some people consider diet and life style changes and maybe this is an area worth some consideration.

I read Graves is a poorly understood autoimmune disease affecting just a quarter of 1% of the population and it is very much up to ourselves to read up and become more active, in our own treatment.

There are a some of my goto books you might like to read :-

Elaine Moore - Graves Disease A Practical Guide - this American lady has the disease.

She has also set up a Graves Disease Foundation website which is very comprehensive.

Barbara S Lougheed - Tired Thyroid - from hyper, to hypo, to healing : another American lady with Graves Disease :

The third book is by an English doctor who has hypothyroidism - good common sense -

Dr. Barry Durrant Peatfield :- Your Thyroid and how to Keep it Healthy -

We may not now have thyroids to keep healthy but we do need to work extra hard to top up and compensate fully for all that we have lost.

You are on a high dose of Levothyroxine and a relatively low dose of T3.

I have read that some people simply stop converting T4 into T3, for no apparent reason.

Maybe there is an argument to drop some T4 and increase the T3 - but without the full blood test including the T3 result, this is just a guess.

I have now switched to taking Natural Desiccated Thyroid - it contains all the thyroid hormones T1,T2,T3,T4, and calcitonin that our own thyroid produces and find I am more well, less stressed and getting along much better than I ever did on Levothyroxine.

I was refused a trial of T3 owing to my suppressed TSH - I did try it myself but prefer NDT.