Thank you

[Allydolally]

Hi Thank you for letting me join the group, I have been dealing with lots of health issues for the past 24 years and still doctors don't listen to how you are feeling, its a fight ever time.

[SeasideSusie Remembering]

Allydolally

Welcome to the forum.

Do you have a thyroid condition?

Are you medicated?

Do you have any test results you can share with us? Maybe we can help.

For a full picture we would need to see results, along with their reference range (these vary from lab to lab) for

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

[Allydolally in reply to SeasideSusie]

I have under active thyroid, iron B9, I have no test results as doctors will not let me have them.

[SeasideSusie Remembering in reply to Allydolally]

Allydolally

I take it you're in the UK? If so then you are legally entitled to your test results without question or charge, this is covered by the Data Protection Act.

Are you in England? If so then many surgeries have online access so you could ask if your surgery provides this, if it does then request to register for this, you will probably need proof of identity. Maybe some surgeries in the other UK nations have online access as well, I am in North Wales and my surgery doesn't have any online access for anything.

If your surgery doesn't provide online access then they must provide your test results if you make a written or verbal request. They have 30 days to do so but most make them available within a day or two.

Here is information from ThyroidUK's main website (this is their forum) about this, have a read through then ask the receptionist (never the doctor, they don't like it) for a printed copy of your test results. If they say you can't have them just remind them they are breaking the law by refusing them and you can then make a Subject Access Request if necessary.

Maybe you can tell us the reason you've joined, do you have any questions? We have many experienced members who are happy to share their experiences and make suggestions.

I have under active thyroid, iron B9

Presumably you are prescribed Levo? What dose?

Do you have iron deficiency? Is it being treated and monitored?

Do you have folate deficiency, again is it being treated and monitored.

When you have your test results, make a new post with the result and the reference range and we will comment.

In case you don't already know the following information may be useful:

Always advised here, when having thyroid tests:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

If you are taking iron tablets, these need to be taken 4 hours away from your thyroid meds as it affects their absorption, also 2 hours away from any other medication and supplements as again absorption will be affected.

Feel free to ask any questions.

[Allydolally in reply to SeasideSusie]

Thank you for info thats the most help I have be given, Yes I am from England , I have requested for online but not given medical records, so going to try again. I asked for the blood test as a doc stopped my medication and said i didn't need them so went to another doctor, on 50mcg levo, low iron on 5mg folic acid and take both together with coffee yes been doing that wrong so as from tomorrow that will change. I join as I just want to feel some sort of normal.

[SeasideSusie Remembering in reply to Allydolally]

Allydolally

OK, you've taken the first step towards hopefully improving things

A doctor should never stop your Levo, did he say why you didn't need it?

So 5mg folic acid is pretty standard for folate deficiency I think. How long have you been on this? Is your level being monitored?

Are you taking iron tablets? Do you have iron deficiency anaemia or iron deficiency without anaemia?

Did you know that eating liver can help raise your ferritin level? Maximum 200g per week due to it's high Vit A content, also liver pate, black pudding and other iron rich foods

apjcn.nhri.org.tw/server/in...

Low iron, folate deficiency, possibly other nutrients are low. Have you had B12 tested? Folte and B12 work together. What about Vit D?

Low nutrients can suggest that the cause of your hypothyroidism could be autoimmune (known to patients as Hashimoto's). Do you know if you've ever had thyroid antibodies tested?

Online access should hopefully give you access to your test results so hopefully you'll be able to see them going back historically. Just get what you can and post them on the forum and we'll go from there.

[Allydolally in reply to SeasideSusie]

Iron deficiency without anaemia i think, no they don't monitor i have ro ask ever year, I don't know about the rest as they don't look into anything else , it looks like I need to start asking for more investigation. I have no access to medical records so will contact again to see if I can get access.

[PurpleNails Administrator in reply to Allydolally]

When I initially registered for online service with GP I only could view a summary of records. But within the the operating system the GP surgery suggested (systm online I think) I was able to go to manage services and “request access to full record” this enhanced access in then processed and granted by the practice. I think they have 30 days to arrange but mine was completed earlier.

[Allydolally in reply to PurpleNails]

Thank you, I have a go.

[Mostew in reply to Allydolally]

Hello and welcome

Don’t accept no from surgery . As others have said you Have a right to your results and any other info dr s have .

I always ring up and ask after blood test for a copy . They have emailed it..

[SlowDragon Administrator in reply to Allydolally]

50mcg levothyroxine is only a starter dose

How long have you been left on just 50mcg

Do you always get same brand of levothyroxine

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Essential to test vitamin D, folate, ferritin and B12 at least annually

Have you had thyroid antibodies tested?

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Many thousands of U.K. patients forced to get FULL thyroid and vitamin testing done privately if GP unhelpful

You are LEGALLY ENTITLED TO COPIES OF YOUR OWN BLOOD TEST RESULTS

If not available online ring and request print out

[Allydolally in reply to SlowDragon]

Hi I have been on 50mcg for 24 years the hospital said need to up dose but doctors say no may years ago, I had to ask as been to years from last test other then that i ask once a year. No they don't test for anything else, The more I read I am starting to see that my other health issues are done to thyroid.

[SlowDragon Administrator in reply to Allydolally]

Sounds like you need new GP

Or to see endocrinologist

First step is to get full thyroid and vitamin testing

Improving low vitamin levels that are direct result of being under medicated is essential

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[SlowDragon Administrator in reply to Allydolally]

Examples of private results

Medichecks results

healthunlocked.com/search/p...

Blue horizon results

healthunlocked.com/search/p...