Still feeling exhausted after taking Levothyroxine 3 months

[clairemorley101]

I'm 52 and after tiredness, headaches, cold extremities and other symptoms for a few months my GP tested me for underactive thyroid in January. I have print outs of all the blood test results. Here are the ones I think I have seen which are the ones you need to see. (I've been taking HRT since 2002 as had an early menopause - GP said that it is fine to continue taking although I have asked if I should stop).

I've put the normal ranges in brackets.

Results:16.01.18

Serum TSH: 8.6 (0.4 - 5.0)

Serum free T4: 13 (9 - 19)

Serum vitamin B12: 805 ng/L (189 - 883)

Serum folate: 15.1 ug/L (4.8 - 19)

Serum potassium: 5.6 mmol/L (3.5 - 5.3)

HbA1c levl: 31 mmol/mol (no range given)

My full blood count shows the following are a little higher than the normal range (given on the results sheets).

Haemoglobin estimation: 161 g/L (110 - 150)

Red blood cell (RBC) count: 4.99 10*9/L (3.8 - 4.8)

Haematocrit: 0.471 ratio (0.36 - 0.46)

Mean corpusc. haemoglobin (MCH): 32.3pg (27-32)

I was prescribed Levothyroxine of 25 micrograms a day (recommended starting dose for newly diagnosed patients of 50+), which I take every morning an hour before breakfast or coffee etc (on advice of pharmacist). I had another blood test on for antibodies straight away and my thyroid levels were also checked.

Results: 22.01.18

Serum TSH: 6.6 (0.4-5.0)

Serum free T4: 13 (9-19)

Serum ferritin 79 ug/L (5-204)

Se thyroid peroxidase Ab conc 1009 iu/mL (positive is >100 iu/mL

I was told my antibodies were a little high but to carry on with the Levothyroxine. My GP had also done a full blood count of which I have all the results - not sure which ones are relevant to put on this post? I was assured by pharmacist that I would start to feel better after about 3 to 4 weeks but here I am 3 months later feeling, if anything worse. The tiredness is awful. On pressing my GP she agreed to test for coeliac and vitamin D which I feel incredibly lucky to have had done as I know it's difficult to get a GP to do this.

Results: 14.03.18

Serum TSH: 4.6 (0.4-5.0)

Serum free T4: 14 (9-19)

Coeliac - normal:

Tissu transglutaminase IgA Lev <0.1 U/mL

Tissu transglutaminase IgG Lev <0.1 U/mL

Vitamin D normal: 93 nmol/L (>50 nmol/L = vit D sufficiency)

(finally got this result on Friday 20.04.18)

I've got a telephone appointment with GP on Tuesday to discuss next steps as although my headaches have greatly reduced and my TSH is within normal range I am still exhausted. Does anyone have any ideas as to why? Could the Levothyroxine not be agreeing with me?

Sorry for the long post but I am so fed up feeling tired. I've been dieting with slimming world for 18 months and been at target weight for almost a year and I am now struggling not to lose more weight! I'm guessing that the Levothyroxine is responsible for me losing weight?

[SlowDragon Administrator]

Can you add ranges on these results (figures in brackets after each result)

25mcg is only half the standard starter dose of 50mcg and when on Levothyroxine the dose should be increased in 25mcg steps until TSH is around one (certainly under 2) and FT4 towards top of range and FT3 at least half way in range

So your GP has been overly cautious starting you on 25mcg. It's enough to switch your own thyroid down a gear, but not enough to provide you with large enough replacement dose

So you are more than ready for a 25mcg dose increase. Bloods should be retested 6-8 weeks after each dose increase (not four weeks as NICE link below says)

But this NICE link outlines that starter dose is 50mcg in most cases, and that majority of patients will need somewhere between 100mcg and 200mcg

cks.nice.org.uk/hypothyroid...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Your antibodies confirm you have autoimmune thyroid disease (also called Hashimoto's)

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Good that you have already been tested for Coeliac disease. But even though test result was negative, many many patients with autoimmune thyroid disease find strictly gluten free diet helps, sometimes significantly

If you are struggling to absorb nutrients then weight loss can occur. Not everyone gains weight when hypothyroid. Quite a few really struggle to maintain weight

The gut is often affected

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is gut connection is poorly understood

[clairemorley101 in reply to SlowDragon]

Thank you so much for your detailed reply and links SlowDragon. I have added the ranges now. I suspected that I needed to increase to 50mcg and will suggest to my GP that be the next step and see how it goes. I think she did 25mcg as I'm 50+ and only just been diagnosed - which I saw was recommended in Levothyroxine leaflet. I assume that because I am now in TSH normal range that she thinks it's ok but clearly not.

That's interesting about leaky gut and my weight loss without trying - I've read about it in dogs but didn't know about it in humans. The reason my GP tested for coeliac was on my suggestion from what I read here but it will be worth trying to see if this can help. I suggested it was Hashimotos but a different GP dismissed it!

Thank you again.

[SlowDragon Administrator in reply to clairemorley101]

Most Medics have little idea thyroid and gut are connect in any way

The UK Medics never call it Hashimoto's, only ever call it autoimmune thyroid disease.

As conventional Medics have no treatment for Hashimoto's, (only the subsequent hypothyroidism), they consider testing for it irrelevant

[shaws]

Weight gain is the most common question and it is due to being hypothyroid because our metabolism has become too slow thus weight is gained.

As dose of levothyroxine is increased and weight can reduce but you must be on an optimum dose, i.e. one which makes you feel well.

The aim of taking thyroid hormone replacements is to relieve our clinical symptoms and that is usually when the TSH is around 1 or lower, not somewhere in the range. You need an increase. Your FT4 is low so I'd imagine your FT3 will be also. I will give you a link and you can see why both should be tested but rarely are.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

T4 is an inactive hormone and has to convert to T3. T3 is the only Active thyroid hormone and it is needed in our millions of T3 Receptor Cells.

[clairemorley101 in reply to shaws]

Thank you for your reply Shaws and the links which I will check out. Yes the weight dropping off me has been a concern as I am now the lightest I've been as an adult. I am going to ask my GP to increase to 50mcg and hope she agrees. I would have thought that she would have done this after 2 months of still not feeling well ......

[shaws in reply to clairemorley101]

I assume your weight loss was a combination of dieting and levo as 25mcg is such a small amount to cause weight loss, I believe. The average doses of levo vary between 100 and 200mcg.

Doctors seem to know little about how to treat a patient who is hypo, believing that tests 'in range' are fine. Whereas they do not realise that we need a TSH of around 1 or lower. They rarely test FT4 and FT3 which enable a better explanation.

[clairemorley101]

Thank you for your reply. From the replies I've had so far it looks like I need an increase in Levothyroxine to get my TSH lower, so will be asking GP if she can. I've been tested for ferritin, folate, B12 and vitD thankfully, results are as follows:

Serum ferritin 79 ug/L (5-204)

Serum folate: 15.1 ug/L (4.8 - 19)

Serum vitamin B12: 805 ng/L (189 - 883)

Vitamin D normal: 93 nmol/L (>50 nmol/L = vit D sufficiency)

The only one that isn't halfway is the ferritin.

Thank you again.

[clairemorley101]

Thank you - it totally explains why I am still not feeling any better. It's so worrying the lack of knowledge that GPs have about treating hypothyroidism 😔

[clairemorley101]

Yes without the help of people such as yourself I wouldn't have known to have asked for all the extra tests before posting on here. One of my poor friends has regular chronic migraines and it completely wiped her out for days 😔

[clairemorley101]

Sounds horrible 😔

[clairemorley101]

Thank you all for your replies and advice. I had a good talk with my GP today, quoting from some of the above links. She totally agreed with my request and has increased my dosage to 50mcg a day, so double what I'm on currently and to have a further blood test in 6 weeks and review. I explained to her that my aim is to get my TSH to as near to 1.00 or below as possible so I can start feeling well again. I picked up new prescription today and am feeling a bit more positive about things now. Thank you all 😀

[clairemorley101]

How awful for and for her family.