Thyroid UK
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Endo questioning my compliance

I am new, diagnosed 2011 with hypothyroidism, endo has questioned my compliance saying he doubts I am taking the levo every day, dose 175mcg. For that reason he has said he will keep my dose the same. I am really suffering with feeling cold, eyelashes falling out, tiredness, eyes and face becoming puffy. This is depressing me to no end.

Thankyou

Dec 2017

TSH 4.8 (0.2 - 4.2)

FT4 14.6 (12 - 22)

FT3 3.4 (3.1 - 6.8)

43 Replies
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Welcome ! How are your levels of B12 - Folate - Ferritin - VitD ? All need to be OPTIMAL for your thyroid hormones to work well in the body - both yours and the ones you are taking !

Do you have Hashimotos ? How do you take your T4 ? Are you on any other medication that could be preventing good absorption ? It is the Low FT3 that is causing your symptoms so it would be good to improve conversion of T4 into the Active T3 with good levels of the above mentioned vitamins and minerals ....

Sorry the Endo was so unkind - a very common trait sadly :-)

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I have iron anaemia and folate anaemia and Vit D deficiency and B12 deficiency. I have TPO antibodies of 578.3 (<34) and TG antibodies of 588.5 (<115) I am not taking any other medications and I take my levo on an empty stomach 4 hours away from food and drink and I take no other supplements thankyou

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So how are you treating all those deficiencies ?

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I really need help with what or how much I should be taking do I post on this thread or a new one thankyou

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I would suggest you have B12 - Folate - Ferritin - VitD tested again and a Full Iron Profile - to check out how things are so you can find out how much to take of each supplement.

Are you able to have Private Testing done at home ? If so there are companies that will send you kits and results by e-mail. Well used by members here. See link below.

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

Once you have the results - start a new thread. Don't forget the ranges as labs do vary ....

You could try your GP but they seem loathe to help these days due to cutting costs.

Meanwhile keep reading and reading the posts here and the various websites that are posted here. Also keep asking questions ....

Good luck !

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Thankyou is 2 weeks recent enough for vit levels

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Yes of course :-) In that case if you can post them now you can do it here !

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Ok thankyou my results are

FOLATE 1.2 (2.5 - 19.5) stopped folic acid until next B12 injection

VITAMIN B12 242 (190 - 900)

FERRITIN 15 (15 - 150) iron stopped in Feb 2017 for anaemia

VITAMIN D TOTAL 38.8 (25 - 50 deficient. Supplementation is indicated) was taking 800iu vit D

Results taken Dec 2017

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How often do you have B12 injections ? Do you have PA ? Your B12 is very low for someone on injections. Ferritin at the bottom of the range also needs attention. Why was your iron stopped ? - are the NHS that poor ! I think you should supplement yourself with VitC to aid absorption.

VitD - you need to be around 100 - so you need at least 5000 IU's of VitD - Docs never prescribe enough and you will never reach 100 on 800 iu's ! Also take Magnesium and VitK2-MK7 with the VitD. Ensure Zinc and Vit A is in your diet too. I take Healthy Origins D3 - they are not expensive. I live in Crete with plenty of sun but still need to supplement to keep my levels up.

Please click onto SeasideSusie then click onto her REPLIES to read the very best information on vitamins and minerals. Her knowledge is far superior to any Doc as they do not study them at Med School.

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Thankyou I have B12 injections every 3 months and I have negative intrinsic factor antibodies. Iron was stopped because iron infusion boosted my level in 2016 and haematology discharged me with only 8 weeks of iron after that with active monitoring.

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So the active monitoring - what was that all about ? - your Ferritin - stored iron in the liver - is on the floor ! I suggest you research and treat yourself - taking control will be good for your well-being :-)

If you think the B12 injections need to be more often then you could top up with a B12 lozenge kept under the tongue. I self-inject B12 weekly and also top up with lozenges :-) You cannot overdose.

Do you have symptoms of LOW B12 still ?

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The haematology department asked my GP to monitor my ferritin and iron and complete blood count levels every 3 months. My ferritin continued to drop on 1 iron tablet a day but my GP did not continue prescribing me any iron and now my ferritin is back down to 15. I have low B12 symptoms still yes

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So I would treat your iron yourself and probably buy a better one than the NHS one ! Don't forget to take VitC with each dose of Iron. Maybe increase the iron to 3 a day to ensure levels rise. I am not an expert on Iron - others know more than me - so hopefully someone will come along later and see your thread and comment.

Are your B12 symptoms neurological ? - if so then you need injections every other day until the symptoms abate. This is laid down in the Guidelines for Cobalamin (B12) and Folate Deficiency Treatments - which your GP should have read but they rarely do :-)

b12deficiency.info/signs-an...

Click onto the link above and scroll down to read the Neurological signs of B12 Deficiency. Also the website will give your loads of information about Iron/Ferritin/Folate too. Watch the videos under the heading FILMS on the Menu to realise just how harmful low levels are.

Read the book - Could it Be B12 ? by Sally Pacholok - also her film on You Tube by the same title about her life story ....

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healthunlocked.com/thyroidu...

The above link takes you to an earlier post here with lots of replies about Iron. Hope it helps. I found this by using the SEARCH BOX here :-)

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Symptoms are neurological yes thankyou will look at link now thankyou

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Please do and then ask for more B12 injections. Do any of your symptoms match the ones in the link ?

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I think the way your Endo spoke to you is appallng. Actually doubting that you are taking your Levothyroxine?? Once you corrected him then that should have been the end of the matter and the next step to take should have been decided between you.

Have you got a reasonable GP? Can you tell them how Endo made you feel?

The only thing I noticed is you say you take your Levothyroxine 4 hours before food. Did you tell Endo this? If so any comment?

Levothyroxine needs stomach acid to work. My leaflet says to take early morning, with water, 30 minutes before food. Many on here wait a full hour. I don't understand why you would wait four hours, though.

Your supplements could be taken after 4 hours, with your next meal.

Another thing I might consider, if this happened to me is, phoning Endo's secretary to say I would like to speak to him as I am concerned about my last consultation, I am having symptoms, and wish to clarify matters with him. Or - something like - I am very unwell , could I be seen in clinic asap. You never know, you might get one of his team. May help to speak to another Endocrinology department doctor.

So sorry to hear of the offensive way in which you were treated. I hate it when Drs doubt our word.

Are you on B12 injections for Pernicious Anemia? Have you been presribed the correct dose of supplements Vitamin D etc, because your Levothyroxine won't work as well if these nutrients levels are left deficent.

Hope you get the correct dose of Levothyroxine for you sorted, and very soon.

All the best.

x

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GP asked me same thing, told endo I had been taking levo properly. I wait 4 hours so I leave enough time for absorption. On injections for pernicious anaemia

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Hi again. I didn't have time to read all of your thread earlier but now gather that you aren't taking any supplements at all now and you are not having enough of the B12 injections even though you have Pernicious Anemia? Is that correct?

As you are known to Haematology, I would call them at 9am tomorrow or call in with copy of your December 2017 results and ask to be seen in clinic asap to have all these deficiencies addressed.

I wouldn't wait 4 hours after Levothyroxine before eating and drinking. I'm not sure what you mean by - :so you leave enough time for absorption" ? Of what?

By the way, what did you say to your GP when they said that? I would go back to GP and say you ARE taking your LT4 every morning and you need all the nutrients deficiencies addressed and properly treated and retesting of TFTs in several weeks time.

Have you discussed the December 17 nutrients results with your GP yet?

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You very likely have Hashimotos and even if you don't you may not be on a sufficient dose of levo.

Is only your endo involved in prescribing or is your GP involved in your treatment?

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I have TPO antibodies of 578.3 (<34) and TG antibodies of 588.5 (<115) and only endo is involved in adjusting my dose thankyou

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You have Hashimotos. See my other reply.

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You do appear to be under-medicated but Marz is right that vitamin and mineral factors can also cause our thyroid to work less efficiently

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I have iron anaemia and folate anaemia and Vit D deficiency and B12 deficiency thankyou

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That helps explain why you have problems reducing your TSH.

Post your other test results with ranges and the treatment you are on for further suggestions.

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So how are they being treated ? No wonder your results are so low. Do you have Hashimotos ?

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Thankyou yes I have Hashimotos and I am not taking any supplements I have lost my way with what and how much I should be taking

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OK would you like some suggestions ? Don't want to overwhelm you :-)

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Do you take levothyroxine with one full glass of water on an empty stomach and wait an hour before eating - food interferes with the uptake of thyroid hormones.

Do you have the earliest possible blood tests, fasting and allow a 24 hour gap between your last dose of levo and the test and take it afterwards?

Drop a note to your endocrinologist and say that he disbelieves that you have been taking thyroid hormones daily that you have been given advice by the NHS Choices for information/advice on dysfunctions of the thyroid gland and have been notified that as your FT4 and FT3 are at the bottom of the range, rather than towards the top, that is why the TSH is at the higher end of the range, which suggests that, due to the high TSH and low FT3 and FT4 that you may not able to convert levothyroxine of 175mcg to sufficient T3. As levothyroxine (T4) is an inactive hormone and has to convert to T3, it may be that your body is not capable of doing so. Especially if you have a defective gene which means you cannot convert.

Tick off your clinical symptoms:

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

This is an extract from the following link:-

Some people do not convert their thyroxine adequately into T3. This could be due to lack of certain vitamins and minerals or possibly due to a faulty gene. The DIO2 gene was researched in 2009 and the results were published in the paper entitled, "Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients" by V Panicker, P Saravanan, B Vaidya, J Evans, A Hattersley, T Frayling & C Dayan - jcem.endojournals.org/content/94/5/1623.full.pdf+html

The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.

The patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still.

This means that there is a possibility that patients who are on levothyroxine alone and still have symptoms may improve with the addition of T3.

Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.

The researchers concluded, “Our results require replication but suggest that commonly inherited variation in the DIO2 gene is associated both with impaired baseline psychological well-being on T4 and enhanced response to combination T4/T3 therapy, but did not affect serum thyroid hormone levels.” This means that some people do not convert but this doesn’t show in their blood tests.

thyroiduk.org.uk/tuk/diagno...

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I am not taking any other medications and I take my levo on an empty stomach 4 hours away from food and drink and I take no other supplements and all bloods done early morning and fasting and leaving 24 hours between bloods and dose thankyou

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I thought you'd be doing the correct thing. We do everything in our power to try to get back a normal life with relief of all symptoms.

With remarks like your Endo makes, it sounds as if he is blaming you and thinks you are lying about your dosing.

Little do they know, that's all I can say and he appears ignorant that some patients have difficulties with conversion and I doubt he is aware of a defective gene that prevents some patients converting T4 into T3. T4 is inactive and has to convert to T3.

Ask GP to test B12, Vit D, iron, ferritin and folate to make sure all are optimum so that we can get the best out of thyroid hormones.

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Ok thankyou my results are

FOLATE 1.2 (2.5 - 19.5) stopped folic acid until next B12 injection

VITAMIN B12 242 (190 - 900)

FERRITIN 15 (15 - 150) iron stopped in Feb 2017 for anaemia

VITAMIN D TOTAL 38.8 (25 - 50 deficient. Supplementation is indicated) was taking 800iu vit D

Results taken Dec 2017

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Everything is below range so I hope your doctor knows how to treat you.

Did the doctor test the intrinsic factor as your B12 was low and testing intrinsic factor confirms whether or not you have Pernicious anaemia.

The following is a link to a past post by SeasideSusie as she has good advicewith vitamins/minerals

healthunlocked.com/thyroidu...

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Yes intrinsic factor antibodies negative but still have symptoms of B12 deficiency

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Yes, a deficiency will have to be rectified but at least you dont have P.A. which is good.

You will always have to keep an eye on your B12 deficiency as deficiencies can also cause us to develop other problems such as dementia. Homocysteine levels can rise so occasionally you should have it checked. B12 supplements keeps homocysteine levels low.

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Your endo appears to be an ignorant fool. Do you want your health in the hands of an ignorant fool? Thyroid UK have a list of endos who undersand your condition better than your present one.

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Thankyou will see if I can see a better endo

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Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

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As you have Hashimoto's you must address this. Majority find strictly gluten free diet helps or is essential

Two typical posts with low vitamin levels and great advice from SeasideSusie Low vitamins are due to under medication and gut issues caused by Hashimoto's

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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

Low vitamin levels affect Thyroid hormone 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

Ask GP for coeliac blood test first

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...

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Typical - blame the patient instead of trying to work out why the dose is too low or is not being absorbed. You need a dose increase but also need to know TOP and TG antibodies and B12, folalte, ferritin and D3

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I have TPO antibodies of 578.3 (<34) and TG antibodies of 588.5 (<115)

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FOLATE 1.2 (2.5 - 19.5) stopped folic acid until next B12 injection

VITAMIN B12 242 (190 - 900)

FERRITIN 15 (15 - 150) iron stopped in Feb 2017 for anaemia

VITAMIN D TOTAL 38.8 (25 - 50 deficient. Supplementation is indicated) was taking 800iu vit D

Results taken Dec 2017

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These are all dire

Insist on testing for coeliac disease

More frequent B12 injections

Post on PAs healthunlocked ask their advice on B12

healthunlocked.com/pasoc

Recommended to also take good vitamin B complex daily, perhaps one with folate, rather than folic acid

If 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...

Ferritin is dire - push to have iron infusion

Vitamin D - 800iu is not enough

Buy yourself some Vitamin D mouth spray by Better You. Comes in various strengths. Try 3000iu daily and retest in 2-3 months

Vitamindtest.org.uk - £28 postal kit

Aim for vitamin D around 100nmol. Important not to take too much, test twice yearly

You will need maintenance dose once reach required level. Likely between 1000-2000iu daily, may vary summer to winter

Read detailed supplements advice from SeasideSusie

Going strictly gluten free should help

Levo dose must be increased so TSH is around one (or less) and FT4 towards top of range.

If FT3 remains low then you may need,like many with Hashimoto's small addition of T3

But other steps must be taken first

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

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