Symptoms worrying me: Hi I am new. I have... - Thyroid UK

Thyroid UK

137,137 members160,818 posts

Symptoms worrying me

TrishaD73 profile image
29 Replies

Hi I am new. I have underactive thyroid which was found after a routine thyroid test showed my TSH above 30 (0.27 - 4.20) and my FT4 10.6 (12 - 22)

I am worried about my symptoms, I am feeling low, hands getting cold, not feeling as warm, tired, hard stool, periods and ovulation becoming irregular, sores around corners of my mouth, dry skin, bone pain, eyelash loss, eyebrow loss. Are these likely thyroid related?

I take 25mcg Levo but was taking 175mcg before that. I have been taking the 25mcg for a week.

Thanks in advance

TSH 0.02 (0.2 - 4.2)

FREE T4 22.8 (12 - 22)

FREE T3 4.1 (3.1 - 6.8)

Written by
TrishaD73 profile image
TrishaD73
To view profiles and participate in discussions please or .
Read more about...
29 Replies
greygoose profile image
greygoose

More than likely, yes. How much levo are you taking? And how long have you been taking it?

However, some of your symptoms could be due to low nutrients. Most hypos have trouble absorbing nutrients, due to low stomach acid. So, it would be a good idea to ask your doctor to test your vit D, vit B12, folate and ferritin. :)

TrishaD73 profile image
TrishaD73 in reply to greygoose

I take 25mcg Levo but was taking 175mcg before that. I have been taking the 25mcg for a week.

greygoose profile image
greygoose in reply to TrishaD73

Ah, more idiot doctors! Ho hum!

Firstly, you didn't need to reduce your levo, at all, with those results. Your TSH was suppressed, but that is totally irrelevant. When on thyroid hormone replacement, it doesn't matter how low your TSH goes, it only matters if it goes high. Your FT4 was a smidgeon over-range, but that was because you're a poor converter. It would have been more intelligent of your doctor to put you onto a little T3 when reducing your levo by 25 mcg.

Because, secondly, reducing you from 125 to 25 was sheer madness and incomptetence! Like taking a steam hammer to crack a walnut. Your FT3 is probably below range, now, so not surprising you have symptoms.

So, you either need to find yourself a more clued up doctor, or else learn about your disease and self-treat. You couldn't make a worse mess of it than the one that's been treating you so far!

But, do get those nutrients tested, if they're low, they could be the reason for your poor conversion. :)

shaws profile image
shawsAdministrator in reply to TrishaD73

Did you reduce your dose yourself, hoping you'd feel better?

TrishaD73 profile image
TrishaD73 in reply to shaws

No endo said I could do with gaining weight

shaws profile image
shawsAdministrator in reply to TrishaD73

This Endo doesn't really understand the workings of a thyroid gland or thyroid hormones, shown by reducing your dose by a massive 150mcg. His method will put a huge strain on your body and heart/brain in particular need optimum thyroid hormones.

I am not medically qualified but I would say he should not be an Endocrinologist.

Nanaedake profile image
Nanaedake

Do you have your latest blood test results that you could post here? What dose of Levothyroxine are you on? You might be undermedicated and additionally you may have some symptoms of low vitamin levels.

TrishaD73 profile image
TrishaD73 in reply to Nanaedake

I take 25mcg Levo but was taking 175mcg before that. I have been taking the 25mcg for a week.

TSH 0.02 (0.2 - 4.2)

FREE T4 22.8 (12 - 22)

FREE T3 4.1 (3.1 - 6.8)

SlowDragon profile image
SlowDragonAdministrator in reply to TrishaD73

Who told you to reduce the dose?

Dose should only ever be increased or decreased by 25mcg

Such drastic dose reduction could make you very unwell.

Your results did NOT show you were over medicated. The TSH was low which is why they reduced dose, but your FT3 was LOW. This shows you have poor conversion

Do you have high thyroid antibodies? If so this is Hashimoto's also called autoimmune thyroid disease

Highly likely to have low vitamin levels

Have you had vitamin D, folate, ferritin and B12 tested recently? Post results and ranges if you have them

Ask GP to test urgently if not been done

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

Your results can suggest over medication but you feel and are hypothyroid

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...

Suggest you reconsider such drastic dose reduction and see GP

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 articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

TrishaD73 profile image
TrishaD73 in reply to SlowDragon

Endo reduced it saying I could do with gaining weight

shaws profile image
shawsAdministrator in reply to TrishaD73

We take replacement hormones which go into our T3 receptor cells so that everything in our body works in concert, i.e. heart, brain digestion etc from top to toe. By reducing so drastically he could cause you harm, I believe, and am not medically qualified. If you are thin - some are naturally - he is not giving you sufficient hormones for your heart etc to work and thyroid hormones aren't weight loss hormones maybe some body builders might think they are but that isn't their function..

I, personally, think you need to change this endcorinologist and I think many would agree with me.

shaws profile image
shawsAdministrator in reply to shaws

You could put up another post and put the question to members and more will be online later in the day stating -

I have been taking 125mcg levo for ? months. I am thin so Endocrinologist reduced my dose to 25mcg so that I may gain weight.

See what the responses will be.

shaws profile image
shawsAdministrator in reply to TrishaD73

As you've been on 25mcg levo for one week only, it is too early to know what your levels will be in six weeks time. greygoose is right that dropping dose from 125mcg to 25mcg is wrong. Did you reduce yourself as you were having many symptoms or your GP?

TrishaD73 profile image
TrishaD73 in reply to shaws

Endo reduced it saying I could do with gaining weight

SeasideSusie profile image
SeasideSusieRemembering in reply to TrishaD73

Trish

How do you feel about your weight?

The endo saying you could do with gaining weight is a ridiculous reason for reducing your dose, and by such a large amount too. Your endo is a total idiot and doesn't have the first idea how to treat hypothyroidism. Run away as fast as you can.

TrishaD73 profile image
TrishaD73 in reply to SeasideSusie

Thanks I like my weight at the moment.

Nanaedake profile image
Nanaedake in reply to TrishaD73

You've had all good advice above, get a new Doctor or self -treat. Your present Endo will make you ill

SeasideSusie profile image
SeasideSusieRemembering in reply to TrishaD73

Trish

If you're happy with your weight, and there are no other problems, then there is absolutely no need to reduce your dose of Levo.

With the results you've posted above, you could actually do with some T3 added because your FT3 is far too low in it's range. What would be the best idea would be to reduce your Levo by 25mcg and add a small dose of T3, that will lower your FT4 a bit and increase your FT3, then see what the results look like and see how you feel to know if you need to tweak doses further. Unfortunately, endos don't seem to be able to understand this :(

As Nanaedake says, ditch this doctor, find one who knows how to treat, or just self treat (keeping an eye on your levels by private testing if necessary).

TrishaD73 profile image
TrishaD73 in reply to SeasideSusie

Thanks. I was on T3 very briefly which helped my symptoms like energy levels and concentration and when this endo took over he saw my levels, saw that I was on T3 and said to me "you must be crazy to be on T3, you'll kill yourself."

SeasideSusie profile image
SeasideSusieRemembering in reply to TrishaD73

Trish

This happens so often, one endo prescribes T3, the patient does well and improves, another endo takes over then takes the T3 away. Absolutely wrong in my opinion, if you've shown a need for it and done well on it then it's cruel and sadistic to take it away.

If that was me (and it's what I do, without my GP's knowledge) I'd just self source and self medicate T3 with your Levo, you know you were better on it, you would just need to make sure FT3 stays in range by doing occasional private testing which is easy and not too expensive.

However, you have the added problem that your Levo has been drastically reduced, you need that back up to probably 150mcg. I would send for the Pulse article by Dr Toft as SlowDragon has suggested, print it off and show question 6 to your GP and ask for your Levo to be increased. Refuse to see your endo again, there's absolutely no point, s/he doesn't know what they're doing. Hopefully your GP has more understanding about treating hypothyroidism than the endo.

Nanaedake profile image
Nanaedake in reply to TrishaD73

You do not need to reduce dose with these results as everyone has said. In fact FT3 is lowish. If you were overmedicated FT3 would be above range. I would resume previous dose. At most reduce by 25mcg or less and retest in 6 week's. Symptoms could be low nutrient levels.

SlowDragon profile image
SlowDragonAdministrator

People who are thin and hypo seem to have even more trouble getting treated

Hashimoto's trashes gut function and then can't absorb necessary nutrients.

You need new endo

Marz profile image
Marz

Do you have results for B12 - Folate - Ferritin - VitD ? - and ranges .... If low it could be the reason you are a poor converter 😊

TrishaD73 profile image
TrishaD73 in reply to Marz

Thanks I do have them and I feel like giving up supplementing for them because my levels don't improve and I don't feel any better since taking them.

SeasideSusie profile image
SeasideSusieRemembering in reply to TrishaD73

Post them Trish. Your Hashi's and it's associated gut/absorption problems will be causing problems there.

You need to address the gut/absorption problems as per information and links in SlowDragon's reply to this thread healthunlocked.com/thyroidu...

When your gut is healed, absorption should improve so supplementing should improve your nutrient levels. But let's see what your levels are and what supplements you are taking.

Also, you need to address the Hashi's by adopting a by adopting a strict gluten free diet which helps reduce the antibodies and has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

TrishaD73 profile image
TrishaD73 in reply to SeasideSusie

Thanks. Ok here they are.

FERRITIN 41 (30 - 400)

MCV *80.2 (83 - 98)

MCHC *379 (310 - 350)

MCH 28.2 (28 - 32)

RED BLOOD COUNT 4.41 (3.80 - 5.80)

WHITE CELL COUNT 7.14 (4.00 - 11.00)

HAEMOGLOBIN ESTIMATION 115 (115 - 150)

HAEMATOCRIT 0.41 (0.37 - 0.47)

PLATELET COUNT 251 (150 - 400)

IRON 7.4 (6.0 - 26.0)

TRANSFERRIN SATURATION % 13 (12 - 45)

FOLATE *1.9 (2.5 - 19.5)

VITAMIN B12 238 (180 - 900)

TOTAL 25 OH VITAMIN D *33.8 (25 - 50 DEFICIENT)

These were taken 4 months ago, have moved GP surgeries to be retested (I do not trust previous GP surgery after they attempted to adjust dose without endo's approval) and I have an appointment in 2 weeks. Taking 800iu D3 since 2013. Iron infusion done in mid 2016 which boosted ferritin but iron levels were below mid range and MCV barely moved. Why that would be I wish I knew. Meant to be taking folic acid but I read somewhere I need to stop taking it before having B12 injections?

SeasideSusie profile image
SeasideSusieRemembering in reply to TrishaD73

Trish

FERRITIN 41 (30 - 400)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

MCV *80.2 (83 - 98)

MCHC *379 (310 - 350)

So you still have iron deficiency and this needs sorting. Discuss with your GP and referral to haematologist if necessary. NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

It's all very well giving an iron infusion, this will boost levels quickly but they need to be monitored and maintained, not allowed to drop again. Some haematologists say that patients should be re-referred if ferritin drops below 50 and another infusion given. But the main thing is to maintain a decent level when it is reached by giving a maintenance dose of iron supplement or eating liver regularly should maintain a good level.

You should take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

**

FOLATE *1.9 (2.5 - 19.5)

VITAMIN B12 238 (180 - 900)

Meant to be taking folic acid but I read somewhere I need to stop taking it before having B12 injections?

Correct. B12 should be started before folic acid. Has it been organised for your B12 injections to commence? As far as I am aware you should have 6 loading doses over 2 weeks, then 3-monthly injections. Many people find they go way over time with their 3-monthly injections simply because the surgery doesn't organise them, something to watch out for. You can ask for further advice from the Pernicious Anaemia Society forum healthunlocked.com/pasoc

**

TOTAL 25 OH VITAMIN D *33.8 (25 - 50 DEFICIENT) Taking 800iu D3 since 2013

Well, that's just taking the pee! No way on this earth is 800iu D3 daily going to raise your level, it's hardly a maintenance dose for someone with a reasonable level.

If your level was below 30 when originally tested, then you should have had loading doses - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

It is probably too late now for your GP to give you the loading doses, but you could try. If you can't have them, come back and we can tell you what to buy and how much to take so that you can help yourself, because your GP may now only be allowed to prescribe 800iu which wont help you at all.

Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

TrishaD73 profile image
TrishaD73 in reply to SeasideSusie

Thanks for reply. I haven't had B12 injections restarted yet but I am hoping new GP will do this at appointment that's coming up. Vit D level was below 30 at diagnosis.

SlowDragon profile image
SlowDragonAdministrator in reply to TrishaD73

Definitely post these and get advice

It's extremely common for medics to ignore low vitamins (they learn little to nothing about nutrition)

Good vitamin levels are key to getting thyroid hormones absorbed correctly.

Gluten free diet helps vast number of people with Hashimoto's or any autoimmune disease

You may also like...

Worried about symptoms

2011 Taking 150mcg levothyroxine Thanks for feedback. October 2017 TSH - 6.2 (0.2 - 4.2) Free T4...

Worried about symptoms - normal TSH

Serum TSH level: 3.97 mIU/L (0.2 - 4.2) Serum Free T4 level: 12.2 pmol/L (12.0 - 22.0) Serum Free...

Help me interpret blood tests + symptoms please!

all psychological. Blood test results: FT4 11.00 [8.00-18.00] TSH 2.45 [0.4-4.45] Anti-TPO 1.1...

Undermedicated symptoms

Newby here, thyroid results are TSH 5.6 (0.2 - 4.2) Free T4 13.5 (12 - 22) Free T3 3.7 (3.1 -......

Symptoms getting me down

you Taking 100mcg levo TSH 3.70 (0.2 - 4.2) Free T4 15.1 (12 - 22) Free T3 4.0 (3.1 - 6.8) Thyroid...