On low dose levothyroxine : New member here, do I... - Thyroid UK

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On low dose levothyroxine

Kimbo8
Kimbo8

New member here, do I need increase with these symptoms?

Dry skin

Pins and needles

Tiredness

Weight gain

Hair loss

Puffy eyes

Constipation

Taking 50mcg levothyroxine diagnosed 2011 thankyou

33 Replies
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SeasideSusie
SeasideSusieAdministrator

Kimbo8

We need to see your thyroid test results, with reference ranges, to know whether you need an increase in dose of Levo.

Have you been on 50mcg only since diagnosis? Give details of changes if you haven't.

Some of your symptoms are indicative of low nutrient levels. Have you had vitamins and minerals tested:

Vit D

B12

Folate

Ferritin

Iron Panel

Full Blood Count

Also, have you had thyroid antibodies tested?

Kimbo8
Kimbo8 in reply to SeasideSusie

Dose always been 50mcg thankyou

TSH 6.2 (0.2 - 4.2)

Free T4 13.2 (12 - 22)

TPO antibody 804.4 (<34)

TG antibody >2000 (<115)

Vitamin D 14.8

Folate 2.0 (4.6 - 18.7)

Ferritin 8 (15 - 150)

Vitamin B12 146 (180 - 900)

Matt8394Alien
Matt8394Alien in reply to Kimbo8

Seems you are way undermedicated.

SeasideSusie
SeasideSusieAdministrator in reply to Kimbo8

Kimbo8

TSH 6.2 (0.2 - 4.2)

Free T4 13.2 (12 - 22)

Yes, you are undermedicated to have these results on 50mcg Levo.

If you've been on 50mcg Levo only for 6 years then you now need to see a different GP. 50mcg is a starter dose and retesting should be carried out 6 weeks after diagnosis and original prescription for Levo, then an increase of 25mcg. Retesting/increasing by 25mcg should then be done every 6 weeks until you feel well and symptoms abate. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo - see thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

Dr Toft 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 dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor.

So make an appointment with another GP to discuss your latest test results, point out that your TSH is over range, your FT4 is very low in range, and you want an increase of 25mcg and retesting in 6 weeks.

**

When booking thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

**

TPO antibody 804.4 (<34)

TG antibody >2000 (<115)

Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which 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_...

**

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies and this is obviously a problem for you.

Vit D has been dealt with in you other thread.

Ferritin 8 (15 - 150)

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. If this is your latest result then you should really have an iron infusion which will raise your level within 24-48 hours, tablets will take many months. 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...

Low ferritin often suggests iron deficiency anaemia and you need an iron panel and full blood count. If confirmed the appropriate treatment is 2 or 3 x ferrous fumarate daily and 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 2.0 (4.6 - 18.7)

Vitamin B12 146 (180 - 900)

You are folate deficient with very low B12. Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an... You need to post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc quoting your folate/b12/ferritin results, your iron deficiency information and any signs of B12 deficiency you may be experiencing.

You probably need intrinsic factor antibodies testing, you may have Pernicious Anaemia and you may need B12 injections. You certainly need folic acid prescribing for the folate deficiency but don't start taking it until further testing has been carried out and B12 should be started before folic acid. The PA forum should be able to give you further guidance.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

**

As you have absorption problems, this needs addressing so that supplements can be absorbed and nutrient levels improved. Thyroid hormone can't work unless nutrient levels are optimal. See SlowDragon's reply to this thread for information and links on how to address absorption problems healthunlocked.com/thyroidu...

**

If your GP has ignored all these nutrient deficiencies as well as failing to raise your dose of Levo over the years despite hypothyroid test results, then he has been extremely negligent. See a different GP, get appropriate treatment sorted, then seriously consider making a formal complaint for negligence against this GP, he is dangerous and shouldn't be treating patients at all.

Kimbo8
Kimbo8 in reply to SeasideSusie

Thankyou complete blood count came back showing anaemia and so did iron profile and they are latest results

SeasideSusie
SeasideSusieAdministrator in reply to Kimbo8

Kimbo

So you need the appropriate treatment for iron deficiency anaemia - see 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.

So now you need to follow the links, print out the treatment summaries, make an appointment with a different GP to discuss starting appropriate treatment for your deficiencies, then throw the book at this blithering idiot who has ignored everything.

But as mentioned, the gut/absorption problems and the Hashi's need addressing so that your thyroid hormone can work.

Kimbo8
Kimbo8 in reply to SeasideSusie

Thankyou will see different GP tomorrow can I write again about what was said?

SeasideSusie
SeasideSusieAdministrator in reply to Kimbo8

Yes please Kimbo. Come back and let us know how you get on. If you start a new thread, please link to this one so members can follow your story without asking questions that are already covered in your two current threads. Good luck with your appointment tomorrow. Be assertive (but polite :) ) and make sure you get the correct prescriptions and arrangements for testing for PA are made.

What is the date/s these blood tests were done? Are they from 2011 or more recent? Usually Thyroid Function Tests are repeated at intervals of about 6 weeks and Levothyroxine increased by 25mcg until stable. Then monitoring (usually by GP) is at 6 monthly or annual intevals.

Have you seen any Specialists? Endocrinologist? Are you currently under Haematology department? Have you got any more blood tests results?

As you can see from the raised Antibodies, these results confirm a diagnosis of Hashimoto's Autoimmune Thyroiditis. Do you have any results for Free T3?

As you can also see, your TSH was above 'normal' range. However, with Hashimoto's it needs to be low down in the range anyway.

My Endocrinologist wrote to my GP that my TSH target therapeutic level is maximum 2, but I have read on here the opinion that maximum 1 is ideal.

Yours, at 6, needs to come down a lot. Possibly it is lower now? Depending on when this test was done - ie was it before or since starting Levothyroxine 50mcg? Always best to include dates of tests.

All these nutrients results demand urgent attention. What treatment is being given? Have you had any injections? What supplements have been prescribed / are you taking.

Are you taking your Levothyroxine on its own and at a different time from all your supplements?

When did you last see your GP?

If these blood tests were taken recently and you are not yet being treated, then you need to see your GP urgently today.

I think it's best to write lists of all your symptoms and tests results, as you have above, to take in with you. (Otherwise, I tend to forget something! )

Have you had any other investigations? Adrenals? Were you given a reason for being left on 50mcg? Any other medical conditions? Any other medications? Are you able to eat a full, healthy diet?

No one on here is medically qualified, can diagnose or treat.

If these were my results, however, I would be wanting urgent medical attention and continuing follow up till fully treated and feeling better.

Hope you get proper treatment and on the route to recovery very soon.

x🐥

Thankyou bloods done oct 2017 and monitored every 6 weeks. I am under an endocrinologist and no longer haematologist. Also have possible low adrenal function which endocrinology tested me for but not treating or investigating which I think he should do.

Thyroid test done after starting levothyroxine 50mcg. No treatment given for low nutrients and all bloods done fasting and on an empty stomach and early morning and skipping levothyroxine dose 24 hours before blood draw. Taking levothyroxine on its own and 4 hours away from supplements and food and drink. Last saw GP June 2017.

On healthy diet.

Hi Kimbo, I do not know enough about the problem to advise...I leave it to the doctor and my annual tests. 50 mcg does sound low. As I mentioned I am on 125mcg...I still struggle with weight, constipation and sleep little. Good luck...Regards.

Hi Kimbo

If all these results you have given are from tests done in October 2017 then what date in October, and have you had bloods taken since?

You say you are being monitored every 6 weeks so have you any other results? What is the full date of your last test and previous two tests (with results) from 6 weeks and 12 weeks ago?

What do you mean by Thyroid tests done after starting Levothyroxine 50mcg? Do you mean the Thyroid results are from 2011? And that the nutrients results are from some time in October 2017?

What treatment were you having from Haematologist and why are you not being seen by them anymore if these results are from October? Have they got more recent results that you haven't been made aware of yet? Did you have any injections from Haematology department? Were you given any diagnosis?

What did the Endocrinologist say about your results, dose and symptoms last time you saw him/her? How long ago was that and when is your next appointment.

I'm sorry, but I'm having difficulty making sense of all this. You say 'No treatment given for low nutrients ', then say you are taking supplements, but not which supplements?

If you are still under the Endocrinologist, then I'm guessing this is because you are still being treated as you are not yet stable on a regular dose of Levothyroxine. And therefore, haven't yet been referred back to your GP for ongoing lifetime monitoring (periodically at less frequent intervals). However, it's been a long time , 6 years?

Looking at your opening post & symptoms, I would think there are a number of things you could do. You're seeing GP today, so that's a start. I think I would :

1) ask GP how best to address symptoms. Ask details of most recent results . Full diagnosis. Reason, if any, still only on 50mcg Levothyroxine. When will it be increased to 75mcg? Why not now? Ask About Correct supplements. Ask about your concern re: Adrenals function.

Or/ And

2) If still under Endocrinologist - phone Secrtary and ask to be seen urgently in Clinic or for a phone call from the Consultant. Prepare questions in advance ask same : - For Full diagnosis; For symptoms to be addressed; Ask about severe nutrients deficiencies and most up to date results. Will Levo dose be increased and if not why not.

3) Phone Haematology.

May I suggest that you don't take a harse Laxative presription from your GP but ask for Lactulose medicine and Fybogel sachets (orange flavour). Keep to the natural laxatives and drink lots of water. All your presriptions should be exempt from charges. If not then ask GP for Form FP92A.

xx

Astute questions.

Thankyou I had the thyroid test results done on 11 October and haven't been able to get bloods done at GP surgery for new results because they are fully booked.

Results from 6 weeks ago

TSH 5.6 (0.2 - 4.2)

Free T4 12.9 (12 - 22)

Free T3 3.5 (3.1 - 6.8)

Results from 12 weeks ago

TSH 10.2 (0.2 - 4.2)

Free T4 11.7 (12 - 22)

Free T3 2.3 (3.1 - 6.8)

The nutrient results are from 11 October 2017 and I was receiving iron infusions from

haematologist in 2016 and I have not been referred back. I had diagnosis of iron deficiency and I saw them last in Feb 2017

Endocrinologist will not see me for another 12 months, he says I have no need to go back and see him urgently

Is it OK to address this point first about Endocrinologist?

So, am I correct in thinking that you have spoken to him/her today and this it what they said?

And - there was No answer given to your question with regards to an increase in dose of your Levothyroxine?

Letter from endo says he won't see me for 12 months and I have been refused increase in dose

Any reasons given in the letter?

No reason given

Hello again Kimbo.

When did you actually last see the Endocrinologist or anyone in that department?

August 2017

Hi again

3rd reply since your last one (easy to miss some when a thread gets lengthy )

-

Did you also have Vitamin B12 injections? If so, When was last one?

When were last Nutrients levels blood tests prior to 11 October 2017?

Have you managed to see or contact GP yet today?

No B12 injections and GP was fully booked and I wasn't classed as high priority. Will post nutrient results later

Hi again. If you haven't seen your GP yet, is there anyone who can go with you for a bit of support.

You say you haven't seen a GP since June - yet you are having blood tests at the GP practice every 6 weeks. This seems rather strange. Something seems to have gone wrong somewhere in communication.

Following the 11/10/17 results you should have made an urgent / same day appointment to see a GP in order to have ALL results addressed.

About Haematology - this doesn't make sense - could an sppoinment have been lost in the post? I would have thought that your next appoinment would have been given before leaving the last one. Why haven't you been seen since February? Have you asked? Were you discharged back to GP? Unless you were discharged, why would you be referred again.

I would phone Haematology and ask if you can go in. Tell them your recent results and that you feel tired and unwell. Or just turn up at reception and ask advice as to what can be done.

You still haven't clarified what supplements you are taking ( 4 hrs after yourLevo) and who presribed them GP or hospital? Are they on your 4 weekly prescription repeats?

No one will come with me for support. I go to GP surgery for bloods but haven't been asked to come in for appointments. I haven't been seen since Feb because the haematologist believed my iron deficiency was resolved and i was discharged back to GP. I take no supplements

Sorry Kimbo,

but, didn't you say on an earlier reply that you take your Levothyroxine tablets 4 hours away from your supplements? Did you mean before your supplements were stopped earlier this year?

Yes sorry I meant I took the levothyroxine 4 hours away from supplements when I took them before they were stopped

What blood tests did Haematology do in 2016 and this year up till February? Did they do tests for Pernicious Anemia?

Pernicious anaemia I haven't been tested for and haematology did ferritin and complete blood count after iron infusion, no B12 or folate

Have you considered replying to Endocrinologist's letter?

However, you need treatment from a doctor now - all your nutrients levels need addressing.

You need to know what's happening with your Levothyroxine dose and Adrenals ( I have no personal experience of Adrenals problems).

As far as I am aware, it is the patient who decides their need to see their GP. It's only when requesting an Emergency appoinment that the receptionist can ask your symptoms. Your medical need is private and confidential.

Is your Practice Manager approachable?

Try to see GP early in the morning. Failing that, would you consider speaking to the Practice manager.

Have you considered contacting P.A.L.S or the Hospital Chaplaincy service? To have someone to intervene on your behalf?

Did you try phoning Haematology & Endo secretary today to mention the October results and your symptoms of tiredness and generally unwell?

The only other suggestions I can think of just now would be to call 111 to ask advice. We don't have that service here.

Other than that, phone your MP's office in the morning.

How long were you told you would have to wait for a GP sppoinment ( with the one you want to see)? How do you feel about waiting that long?

I am not confident in replying to endo. I spoke to practice manager tonight and asked her what I can expect to happen from my treatment. Endo has said it is too early for me to come back and see him and haematology want more recent bloods before seeing me again. I have an appointment booked tomorrow morning

That's good news that you have an appointment tomorrow - but who with ?

GP or blood tests with nurse? You really need both. But if Haematology will see you this week, then, hopefully, you will begin to get somewhere. Remember to write down all your questions. And take all your copies of your blood tests to refer to. Yes, they should have them all on the computer, but refer to results if necessary. You could even print copies from the NICE guidelines to keep in a pocket, just in case. I would like to think it wouldn't come to that (it shouldn't ). They should have access to your 11 October 2017 results as well as the retests this week. You can produce your copies if they can't find them. Remember to tell them how tired you have been.

I replied on your Vit D post, so won't duplicate on here. All the best for tomorrow. Keep in touch x

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