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Thyroid UK
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New here come from PA forum

Hi this is my second post on Healthunlocked but first one on thyroid UK. Can someone please tell me why I am still experiencing symptoms. Diagnosed hypothyroid in 2013. Taking 50mcg levothyroxine but have been on more than this. List of symptoms below. Had first B12 injection 3 months ago, was due one in August but am now receiving it in September. Also taking 800iu D3 since 2013, ferrous fumarate since 2013 as well. GP said not concerned about folate as it is only just under range. Thankyou

Hard stool

Memory loss

Pins and needles

Tiredness

Blood rushes from standing from sitting or kneeling

Irritability

Rumbling in head/ears

Tinnitus

Breathlessness

Clumsiness

Weight gain

Muscle cramps and pains

Heavy periods

Hair loss

Anxiety

Serum B12 156 (180 - 900 pg/L)

Serum folate 2.3 (2.5 - 19.5 ug/L)

Serum ferritin 44 (30 - 400 ug/L)

Vitamin D total 23.6 (<25 nmol/L severe vitamin D deficiency. Patient may need pharmacological preparations)

Serum TSH 3.87 (0.2 - 4.2 mIU/L)

Serum free T4 13.1 (12 - 22 pmol/L)

Serum free T3 3.2 (3.1 - 6.8 pmol/L)

Thyroid peroxidase antibodies 841 (<34 IU/mL)

Thyroglobulin antibodies 255.3 (<115 IU/mL)

36 Replies
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Welcome to our forum and I am sorry you are hypothyroid.

First thing I will say your dose of 50mcg is only a starting dose and if you've been taking it for five years you will have to take your own thyroid health into your own hands.

The aim of replacement thyroid hormones (levothyroxine) is to relieve all clinical symptoms - not to give you more and for that reason TSH should be 1 or lower. The following are extremely low and I will add in SeasideSusie re the following:

Serum B12 156 (180 - 900 pg/L)

Serum folate 2.3 (2.5 - 19.5 ug/L)

Serum ferritin 44 (30 - 400 ug/L)

Vitamin D total 23.6 (<25 nmol/L severe vitamin D deficiency. Patient may need pharmacological preparations)

The following:-

"Serum TSH 3.87 (0.2 - 4.2 mIU/L)

Serum free T4 13.1 (12 - 22 pmol/L)

Serum free T3 3.2 (3.1 - 6.8 pmol/L)"

TSH is too high should be 1 or below.

FT4 and FT3 is too low - should be towards the upper part of the range.

You need an increase of 25mcg every six weeks to bring your TSH to 1 or lower and FT4 and FT3 towards the upper part of the ranges.

Blood tests should be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards.

Always get a print-out of your results and when you realise that doctors know little about how best to treat us, we have to do it ourselves.

All vitamins/minerals have to be optimum as well. Doctors rarely know how best to treat us and wrongly believe that 'in range' is fine even if at the bottom when we need them towards the top.

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Thankyou no I have only been on the 50mcg since August and I really think I need it increased due to ongoing symptoms, blood tests always done first thing and fasting and leaving levothyroxine 24 hours before blood draws. Blood test for thyroid was done 3 weeks ago.

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Yes, you should have a blood test every six weeks, and 25mcg increases until your symptoms are relieved. Follow routine for Blood Tests to get the best results for you.

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Hi just reading your advice on violet34's post. Do you mind explaining more about results and when tests should be taken? Iv never been told to have a fasting test and have taken levothyroxin within 2 hours of my blood tests. Is this the wrong way to do it?

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Hi maybe answer this on a thread of your own as your reply might get missed?

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Doctors don't know anything about how best to get optimum results for patients, I am afraid although I do hope your GP will be better than most.

The TSH, Thyroid Stimulating Hormone, from the pituitary gland, tries to flag up more thyroid hormones from the thyroid gland by raising it. In other countries if it goes above 3, we are diagnosed as hypothyroidism but in the UK we have to wait till it is around 10.

The TSH is highest early a.m. and drops throughout the day, so is lower at night than a.m.

You take levothyroxine first thing on an empty stomach, with one full glass of water and wait an hour before eating. Food interferes with the results.

Usually doctors/labs only take TSH and T4, but we find that if we don't feel very good Free T4 and Free T3 should be taken (privately if GP or lab wont). Sometimes we don't convert T4 (levothyroxine) inactive and into T3 which is the only active hormone required in our receptor cells.

As Violet34 suggests. If anyone has a separate question always put in on a new post as it will probably get more responses than being put within another's post.

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Thank you I will post this question again as I'm picking up my test results from the last 6 months today and I'd love to have them explained. I'm really knee to this a very confused ha

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Welcome Violet34. Your thyroid antibodies blood test result is elevated showing you have an autoimmune thyroid condition called Hashimotos. Most people with an underactive thyroid don't feel well until their TSH is about 1.0 or a little lower. Your FT3 (serum free T3) is much too low indicating you need a dose increase of Levothyroxine.

Your doctor should be concerned about your folate as once you have started B12 injections you should raise your folate levels since Levothyroxine does not work well unless all our vitamin levels are optimal but I think the pernicious anaemia forum can advise on how best to supplement.

Many with thyroid conditions find it best to go gluten free as being hypothyroid and taking Levothyroxine affects the gut. It can cause low stomach acid or bacterial overgrowth in the small intestine. This makes it difficult to absorb nutrients from food no matter how good diet is.

Your vitamin D supplements are nowhere near enough to address your deficiency. What is your doctor doing about it? Check NICE website guidelines for loading doses and CCG local area guidelines should be similar. Ask GP to treat you according to guidelines. your maintenance dose needs to be higher too.

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Thankyou I have symptoms of what I thought was high stomach acid last night, I had a feeling of vomit/bile/acid in my throat and I thought I was going to be sick. I used to take PPIs for this and it helped temporarily but I would then get an upset stomach and the sick feeling would come back again. GP is not addressing the vitamin D deficiency at all so I will go back to him tomorrow.

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It's probably low stomach acid, the symptoms are the same but treatment is different. A lot of people on this forum take a dessertspoon of organic apple cider vinegar with a glass of water before their main meal or even before each meal to ease symptoms. Others take Betaine HCL with pepsin. Ive tried both but apple cider vinegar works best for me.

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That's exactly how l feel, before l was on medication l just felt very tired and lost weight but at least l enjoyed my food, now l dread eating as l get so much pain

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These are clinical symptoms. We have to educate ourselves in order to have a pain-free symptom-free life.

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

You can tell your GP you've taken advice from the NHS Choices for information/advice about treatment of thyroid gland dysfunctions Thyroiduk.org.uk.

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Glad you found your way here :-) Welcome ! Have you been told you have Hashimotos ? - auto-immune Thyroid.

You do not mention the date of the tests below - are they recent ?

You are on a starter dose of 50 mcg - you should be re-tested every six weeks from starting T4 and your dose adjusted accordingly. Why was it reduced ?

Your TSH is too high and should be 1 or under for someone on medication. The FT4 and FT3 are also very LOW in range due to your very low dose of T4.

800 IU's of D3 will not be enough to raise your VERY low level of VitD. Did you have loading doses ? If not I would suggest around 10,000 IU's for one bottle/jar and then reduce to 5000 and re-test after the winter. The GP's always prescribe far too little and it rarely raises levels - it is a maintenance dose for the healthy ! There are co-factors - VitK2 MK7 and magnesium. VitD improves the uptake of calcium from foods and the K2 directs it away from the arteries and into the bones. VitD is fat soluble.

Your folate needs to be higher as it works with B12 in the body. A good B Complex will keep all the B's in balance and give you Folate or Folic Acid. Folate is often suggested here for Hypos to be mid-range. B12 better nearer the top of the range to prevent brain shrinkage and cognitive decline

Being Gluten Free should help to heal the gut and reduce anti-bodies - along with taking Selenium. Also it is possible you have LOW stomach so that may need addressing to to improve your uptake of nutrients from foods.

There is a great deal of work needed so take it slowly and keep asking questions here and people will be happy to help. Sundays can be quiet - only mad people like me sheltering from the sun of Crete for a moment or two !!

I am not a Medic - just a Hashimotos gal with a B12 issue due to surgery for TB and Crohns.

Check out the amazing SeasideSusie here on this forum - by clicking onto her name and reading her REPLIES - she is so very knowledgeable about Vitamins and Minerals. I have just touched the surface !

Good Luck !

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Thankyou the thyroid results and everything except B12 done 3 weeks ago. Dose was reduced because the endo did not like previous results of TSH 0.03 (0.2 - 4.2 mIU/L) free T4 20.4 (12 - 22 pmol/L) and free T3 4.5 (3.1 - 6.8 pmol/L)

I did not have loading doses of viamin D just started on the 800iu

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Oh dear - it did say on your D3 results you may need loading doses. So do increase and introduce the co-factors.

Another Endo who does not have a clue - you are only over medicated when the FT3 is over range and yours is NOT. No wonder you are having so many symptoms. T4 is a storage hormone doing very little in the body. It has to convert into the ACTIVE hoemone T3 which is needed in every cell of the body - trillions and trillions of them. so when the FT3 is low there is not enough to go around :-(

Your results for T3 could be improved by upping the T4 dose. How long have you been on the reduced dose of T4 ?

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Thankyou been on the reduced dose since start of August this year from 150mcg levothyroxine. Since then I have had an increase in stomach symptoms like the low stomach acid (I have been told this is what I more than likely have now), stomach rumbling, empty feeling in stomach. I have been taking PPIs though not regularly, just taking them on the go when I am out and they help temporarily but a few hours later the problems come back

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Still think you should increase your dose by 25mcg and see how you feel. Please read the paper that is being presented to NICE soon about the inadequacies of testing and treating the Thyroid. Diogenes is a Research Analyst/Scientist on this forum ....

healthunlocked.com/thyroidu...

It takes some reading but should help you understand why so many of us have to take control and help ourselves :-)

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Just to mention PPI's reduce the effectiveness of Levothyroxine so can exacerbate symptoms. So if you can avoid it's better.

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Thankyou I only took the PPIs for 2 days and the hypothyroid symptoms started before that.

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Also reduces the absorption of B12 and other vitals .... do research PPI's. Big earners for Big Pharma and for Docs who do not know the difference between LOW Acid and High ....

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There was nothing wrong with hose results as your FT3 was well within range. You may find when you correct your vitamin deficiencies and stomach issues you will then need less Levothyroxine as your FT3 may rise. You need to check bloods and see how you feel as you go along.

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You need to increase your Levothyroxine back up, probably in 25mcg steps. It never needed reducing in first place. FT3 was no where near top of range

PPI's are terrible for thyroid. Almost certainly low stomach acid due to being very under medicated.

Improving vitamins essential.

But also highly likely you need to be strictly gluten free. Hashimoto's causes hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help really reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

Vitamin D testing, including free vitamin D supplement

betteryou.com/vitamin-d-tes...

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...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

B12 injections, sounds like you need more frequently. Ask on PAS Unlocked

Taking good vitamin B complex recommended as well

But when you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

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Thankyou I am currently getting good advice from the PA forum and they have advised me to write to GP about the B12 injections and folate. Also GP is monitoring my vitamin D level every 6 months

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Make sure vitamin D level is around 100nmol

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Violet34

Serum B12 156 (180 - 900 pg/L)

Serum folate 2.3 (2.5 - 19.5 ug/L)

I see you have had advice from the PA forum so I wont comment on these.

**

Serum ferritin 44 (30 - 400 ug/L)

I have skimmed through the replies but can't see that anyone has mentioned this result.

For thyroid hormone to work ferritin needs to be at least 70, preferably half way through range. You need some iron supplementation.

Did you have an iron panel and full blood count to see if you have iron deficiency anaemia? It would be an idea to ask for these to be done as your ferritin level is so very low in it's range.

You really could do with iron tablets prescribed (but ask for an iron infusion and see if you can get one, an infusion will raise your level within 24-48 hours whereas iron tablets will take months). If you can't get iron tablets prescribed then you can buy Ferrous Fumarate on Amazon but you would have to retest after 3 months and keep an eye on your level. 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.

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...

**

Vitamin D total 23.6 (<25 nmol/L severe vitamin D deficiency. Patient may need pharmacological preparations)

I did not have loading doses of viamin D just started on the 800iu GP is monitoring my vitamin D level every 6 months

Nowhere near good enough. 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level.

You are severely deficient and your GP is not following the guidelines - 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 maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU 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 regimens 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)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and demand that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (not 800iu) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose (not 800iu) which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

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 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.

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Worryingly Violet34 says she has been taking ferrous Fumerate since 2013 ....

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Thanks fibrolinda I missed that.

Violet34 As you have been taking Ferrous Fumarate for four years, it's imperative that you ask your GP to explain why, after such a long time, is your ferritin at the bottom end of the range. Maybe, with all your dire nutrient levels, you have an absorption problem and this needs investigating - suggest this to him.

How much ferrous fumarate are you actually taking, and were you ever diagnosed with iron deficiency anaemia?

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Thankyou I take ferrous fumarate once a day since Jan 2017 but before iron infusion in May 2016 I was on 3 a day and haematologist diagnosed me with iron deficiency anaemia

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Have they been monitoring you regarding your iron deficiency anaemia? The guidelines state

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.

Even if your other tests show the iron deficiency anaemia has been resolved, you still need something drastic doing about your low ferritin level.

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Thankyou MCV is consistently below range and iron always at bottom of range. Even after infusion it was still not very high. Previous GP practice only monitored my level once but GP practices before that always checked complete blood counts and iron panel

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If your MCV is below range then you are still showing signs of iron deficiency anaemia. You need this sorting. If the infusion didn't make much difference, then some further investigations need to take place. I think you really need to push this. All vitamins and minerals need to be optimal for thyroid hormone to work, and with ferritin below 70 it just wont happen, there can be no conversion of T4 to T3, and T3 is the active hormone that every cell in our body needs.

Your haemotologist should be monitoring you surely, ask to be referred back, they can't leave you like this, especally as your GP isn't monitoring your levels.

You really are being very badly let down here.

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Can always make a thread detailing pre infusion and post infusion results if need be?

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I don't think there's much point. If you're still showing signs of deficiency then you have to push to get this sorted.

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It's a bloody minefield. Been U/A since 2012. Thyroxine reduced/ increased but still experiencing same symptoms if not worse. I ended up getting blood tested privately (£175) but worth it. All my results were at critical stage because GP's /Endos use different ranges. Private health carer gave me list to take. I now take 8000 vitD a day, 2 B12, 1 Milk Thistle, and 1 Turmeric. Also gluten free foodI was on 125mg Thyroxine and at my next blood test with GP he reduced as he says my thyroid tests have improved. I have more energy now, have dropped a dress size and most of symptoms have disappeared. Health carer hoping to eventually get thyroid working properly again and no need for meds. I haven't mentioned to GP yet as waiting for next test. If you can afford it I would recommend private tests and go from there. Good Luck x

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As a slight aside . . I noticed you suffer with tinnitus . . . as do I really badly, bilaterally, for about 15 years so obviously I'm curious. Would you mind elaborating on this aspect of your Hypothyroid symptoms . .. i.e . . are you sure that the two are linked? How bad is yours . .etc . .. ?

Looks like you're getting lots of good advice on this invaluable forum. Good luck.

/

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Hi Violet

I'm in PA too! Where are you?

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