Newbie

[14yasmyn]

I feel pretty rough on increased dose of 175mcg levothyroxine and my partner has told me I look drained and ill I feel ill and I have problems with bladder infections and difficulty with bowels are these all hypothyroid related diagnosed 2013 thank you

TSH *6.3 (0.2 - 4.2)

Free T4 13.1 (12 - 22)

Free T3 3.2 (3.1 - 6.8)

Ferritin last checked in June, trying to get information from GP as to why I am only prescribed 1 iron tablet a day and not 3 for iron deficiency and ferritin probably in the 30s by now and monitored every 3 months by GP

Ferritin 61 (30 - 400)

MCV *77.2 (80 - 98)

MCHC *376 (310 - 350)

Haemoglobin estimation 120 (115 - 150)

Haematocrit 0.41 (0.37 - 0.47)

MCH 28.2 (28 - 32)

RBC count 4.42 (3.80 - 5.80)

WBC count 6.12 (4.00 - 11.00)

Iron 10 (6 - 26)

Transferrin saturation 15 (12 - 45)

Taking folic acid once a day but been getting increasing but random symptoms since taking this and result before supplementing and result taken October 2017

Folate *2.38 (2.50 - 19.50)

First B12 injection June 2017 for possible B12 symptoms and haven't had one since and result taken February 2017

Vitamin B12 237 (190 - 900)

Vitamin D monitored every 6 months by GP and taking 800iu vitamin D and result taken January 2017

Total 25 OH vitamin D 31.3 (25 - 50 vitamin D deficiency. Supplementation Is indicated)

[minxabroad]

Hi, I am new here myself but your TSH is high suggesting your thyroid is underactive despite the increase in Levothyroxine. Are you feeling "rough" only since the increase? How long have you been taking the increased amount?

[14yasmyn in reply to minxabroad]

Thanks been on this dose since 11 October this year and have felt poorly before the increase only worse now

[minxabroad in reply to 14yasmyn]

When are those blood test results from?

[14yasmyn in reply to minxabroad]

October 2017

[14yasmyn]

Also getting soreness in my legs

[Nanaedake in reply to 14yasmyn]

Have you had your vitamin levels tested. Sometimes increasing thyroid meds seems to unmask vitamin deficiencies and people feel unwell until their deficiencies are corrected. Not sure what kind of soreness you have in legs but vitamin D deficiency could cause bone, joint pains.

You do need a dose increase according to your high TSH level and low FT4 and FT3. Not enough thyroid medication can cause constipation.

For bladder infections have you tried taking vitamin C to help acidity levels and discourage bacteria?

[14yasmyn in reply to Nanaedake]

Soreness is like a tenderness in my muscle

[14yasmyn in reply to Nanaedake]

Thanks I haven't found a vitamin C supplement that helps because I took one that is fizzy and effervescent mixed it in some water and after drinking it had a heavy feeling stomach

[14yasmyn in reply to Nanaedake]

I take a lot of supplements but I didn't think I would have been deficient in any of them now except maybe B12 since I take folic acid and have been feeling worse since taking this and ferritin which falls 20 points after each period

[Marz]

How do you take your Levo ? Away from foods ? - an hour before or two hours after - if taking at night ....

Are you taking any other meds ? Gut/absorption issues ?

[14yasmyn in reply to Marz]

I take thyroid meds on an empty stomach away from foods and an hour before and two hours after and I take no other meds but I do take supplements and keep them well away from thyroid meds I think I have gut absorption issues because of bloating flatulence burning in gullet and stomach thanks

[Marz in reply to 14yasmyn]

So I would test the B12 - Folate - Ferritin - VitD - am thinking they will be low in range - hence your thyroid meds are not working ....

[14yasmyn in reply to Marz]

Thanks I have results of these do I post them?

[Marz in reply to 14yasmyn]

Yes and with the ranges please

[14yasmyn in reply to Marz]

Ferritin last checked in June, trying to get information from GP as to why I am only prescribed 1 iron tablet a day and not 3 for iron deficiency and ferritin probably in the 30s by now and monitored every 3 months by GP

Ferritin 61 (30 - 400)

MCV *77.2 (80 - 98)

MCHC *376 (310 - 350)

Haemoglobin estimation 120 (115 - 150)

Haematocrit 0.41 (0.37 - 0.47)

MCH 28.2 (28 - 32)

RBC count 4.42 (3.80 - 5.80)

WBC count 6.12 (4.00 - 11.00)

Iron 10 (6 - 26)

Transferrin saturation 15 (12 - 45)

Taking folic acid once a day but been getting increasing but random symptoms since taking this and result before supplementing and result taken October 2017

Folate *2.38 (2.50 - 19.50)

First B12 injection June 2017 for possible B12 symptoms and haven't had one since and result taken February 2017

Vitamin B12 237 (190 - 900)

Vitamin D monitored every 6 months by GP and taking 800iu vitamin D and result taken January 2017

Total 25 OH vitamin D 31.3 (25 - 50 vitamin D deficiency. Supplementation Is indicated)

[tzracer in reply to 14yasmyn]

Hi, use the edit button and paste these results under your thyroid results, they will get lost and all are low and need addressing. SeasideSusie is really good with vitamin advice

[14yasmyn in reply to tzracer]

Done thanks

[Marz in reply to 14yasmyn]

VitD is good around 100 - so the Docs prescribed amount is pretty useless. I would buy your own and take around 5000 IU's daily along with VitK2-MK7 and Magnesium. VitD naturally improves the uptake of Calcium from foods and the M2-MK7 directs it away from arteries and soft tissues and into the bones and teeth.

Your B12 needs to be higher - so the benefit of the injection soon disappeared May I suggest you ask your GP why he thinks it has gone so low again. Have you been tested for Pernicous Anaemia ? - does anyone in your family have it ?

You could try a GOOD B Complex containing Methylfolate instead of folic Acid - in case it is the FA that is causing you an issue. Why did you only have one B12 injection ?

Read around on this forum using the Search box for ideas about supplementing Iron - there are many types. Also taking VitC with each dose does help absorption I have read. For some reason even with Crohns I have not had an Iron issue so am not as well informed as others

[14yasmyn in reply to Marz]

Thanks for advice I haven't been tested for pernicious anaemia and it doesn't run in the family only autoimmune illness does and I haven't been booked in for another B12 injection yet

[Marz in reply to 14yasmyn]

PA IS auto-immune

[SlowDragon Administrator in reply to 14yasmyn]

These are all too low

If vitamin D is tested every 6 months why is last test January?

800iu vitamin D is far too small

You need B12 tested, likely very low

See SeasideSusie vitamin advice

Eg

healthunlocked.com/thyroidu...

[14yasmyn in reply to SlowDragon]

Haematologist asked GP to test vitamin D again when the 6 months came round but when the 6 month period came round the lab wouldn't test

[SlowDragon Administrator in reply to 14yasmyn]

Not surprised

Most of us here have to test privately

Vitamindtest.org.uk

£28 postal kit (from NHS hospital)

Creepingprivatisation

Level is very important to check twice year especially when on Levo

[Singoutloud]

Just a thought but were you given a different brand of Levothyroxine at all?

[14yasmyn in reply to Singoutloud]

No

[tcpace]

You may be taking too much T4 - it seems that it can build up in the body and make you feel unwell - presumably because it isn't converting properly to T3 in your body. Your T3 looks low so you may need to look into replacing some of the T4 dose with T3.

[14yasmyn in reply to tcpace]

Thanks I have been on as much as 200mcg levo with none of these symptoms and no longer on T3

[tcpace in reply to 14yasmyn]

That doesn't make sense if you don't mind me saying. If previously you've been on 200T4 with no symptoms, how come you're now on 175T4 (after an increase) with symptoms? At face value, that seems to suggest that you need to go back up to 200T4. How did you get to 200T4 - presumably you did it in stages and at levels where you felt unwell (like you do now at 175T4)? If you've previously felt good at 200T4, why not go back to that dose level? Just wondering (and just trying to be helpful, not critical).

[14yasmyn in reply to tcpace]

Thanks I went up to 200mcg levo without my endo's involvement because I was fed up of feeling so ill with a TSH of 1.60 and Free T4 of 15.7 and Free T3 of 4.5 and it was done from 175mcg levo then my results went thyrotoxic on 200mcg levo with a TSH of 0.02 and Free T4 of 21.2 and endo reduced me to 150mcg and now I am on 175mcg levo

[tcpace in reply to 14yasmyn]

The late Dr S would have told you to go by how your body feels, not by the blood tests. If you felt well on 200T4, he would have been happy with that as long as you weren't showing signs and symptoms of being overactive. Mainstream endos basically don't know what they're doing when it comes to the less straightforward cases of hypothyroidism - they've been brainwashed into thinking that the blood tests are the be and end all. Dr S gave many many people their lives back when mainstream endos were happy to leave them unwell (often seriously unwell) because their blood test results looked fine. Dr S = the late Gordon Skinner by the way - a massive loss to those suffering with hypothyroidism. I know all about Dr S - he gave my daughter her life back.

[SlowDragon Administrator in reply to 14yasmyn]

That wasn't thyrotoxic. FT4 was within range

But likely you need to be strictly gluten free and improve gut, and vitamins.

[Angel_of_the_North in reply to 14yasmyn]

That doesn't sound thyrotoxic as Free T4 (and so also likely free T3) were in range. The reduction was too large anyway - should only be 25mcg up or down at a time. You need a decent endo. TSH doesn't really matter if frees are good.

[cazlooks]

The reason you feel rotten is because your T3 is so low. It looks as if your TSH is working overtime to convert the T4 (the stored form) into T3 (the form usable to your body) but not achieving this. Ask your GP why this is happening, he may refer you to a specialist. If he doesn't refer you, you may want to ask for a different brand of levo, there's a few on the market. Alternatively, if levo continues to not work you could buy a natural brand (totally frowned upon by the medical profession, but a popular choice). Don't rush to panic though. If you have only been on since October there is a chance that your body hasn't built up enough T4 to start using it. You may have to wait another few months before the proper effects are felt.

[14yasmyn in reply to cazlooks]

Thanks endo wants to retest my thyroid next week

[SlowDragon Administrator]

Do you have high antibodies? This is autoimmune thyroid disease also called Hashimoto's

For full evaluation you need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

If these vitamins are too low you struggle to use thyroid hormones

Low vitamin D makes bones hurt

Magnesium powder is cheap and easy to use. Helps with constipation. Starting on low dose, take at least 4 hours away from taking Levo (take afternoon or evening)

naturopathconnect.com/artic...

If you can't get full thyroid and vitamin testing from GP

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Have you got different brand of Levo recently?

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

[14yasmyn in reply to SlowDragon]

Thanks have posted vitamin and mineral levels and I haven't changed brand of levo I have antibodies of Thyroid Peroxidase antibody 604.5 (<34) and Thyroglobulin antibody >1200 (<115)

[Marz in reply to 14yasmyn]

Are you gluten free to help with reducing anti-bodies ?

[14yasmyn in reply to Marz]

Yes

[SlowDragon Administrator in reply to 14yasmyn]

So definitely Hashimoto's

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.

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

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)

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

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

You need TSH as near bottom of range as possible and FT4 towards top of range, FT3 at least mid range

When vitamins are improved, strictly gluten free and Levo high enough to get this, if FT3 remains low you may need addition of small dose of T3

[SlowDragon Administrator]

Are you strictly gluten free?

[14yasmyn in reply to SlowDragon]

Yes

[Angel_of_the_North]

I think you need a new GP, as those resuts are dire. Folate is still under range, even though you are supplementing so there is a problem with absorption (or you have the genetic defect which means you can't use folic acid, only folate) since your B12 is also dreadful. I suggest you pop over to the HU Pernicious Anaemia Society and ask their advice. TSH is far too high and frees are low so you need the increase in levo, but you won't be able to use it unless your vitamins are optimal. 800iu vitamin D is a good dose for a child to maintain good levels over the winter but won't do anything for an adult or someone who is deficient. Buy your own vit D3 and take around 5000iu a day for 3 months and then retest. Also take magnesium and vitamin K2 (MK-7) with your vit D to make sure that calcium goes into your bones not your arteries. You might find that a gluten-free diet helps. You can buy ferrous fumarate 210mg from several pharmacies without prescription, so you can up your dose to the recommended 3 a day (taken with vitamin C each time)

[SlowDragon Administrator]

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing [e-mail] print it and highlight question 6 to show your doctor.

You can give to your endo

[SlowDragon Administrator]

Very interesting links. Thanks