Help needed

[Jennymiddle]

I am newly diagnosed and know very little about the condition. I don't know my results but I will attempt to get them next week. My doctor started me on 25mg but said only take half for the first week, I have now started on a full one after 3 days due to symptoms been so bad. I have been reading through a lot of comments and don't have a clue what all the levels mean. Also what is an endo?? Do I need extra vitamins , I already take vit D so should I continue or stop taking them. I also take HRT should I stop taking that too.? I'm so confused with it all. Should I go see my doctor to discuss it with him or just let the tablets take there course. 😀

[AngieAsh]

Hi Jenny. I don't think anyone here can really offer too much help without your test results. Also are you Hypo or Hyper, you don't say. I am Hypo and was started on 50 mg of Levothyroxine but I know that sometimes a lower dose is given if people are elderly or have heart conditions. Your dose will be increased steadilly as you have further tests which should ideally be done every 6-8 weeks until you reach your ideal dose.

As well as your Thyroid results it helps if you can get and post Vitamin B12, folate, feratin and vitamin D results and also if you can get the GP to order it Thyroid antibodies. Please also add the ranges in brackets that follow the results.

An Endo is an Endocrinologist, an expert usually working in a hospital that specilises in Thyroid and Diabetes conditions as well as other endocrine problems. Your GP can refer you to one if they think it is necessary. Angie

[Jennymiddle in reply to AngieAsh]

Thanks for your reply. I have tried to get my results but the receptionist said I need to ask the doctor for them and the earliest appointment is December 13th 😡 So I will have to wait until then

[ITYFIALMCTT in reply to Jennymiddle]

That's disappointing. While you were there, did you ask the receptionist if they offer online access as this is one way to keep track of your results without having to request print outs etc.

[Jennymiddle in reply to ITYFIALMCTT]

Thank you I will pop down later and see the receptionist and try and sort that out. Thanks very much for your advice everyone I really appreciate it. I'm really hopping I feel better soon once the tablets start to work.

[AngieAsh in reply to Jennymiddle]

Like Ityfialmctt said you can ask the receptionist for online access to your results Jenny. We are all entitled to this as of 2016. All I had to do was take in proof of ID (my driving licence and a bank statement) and the receptionist set me up with an account. If you do that and it doesn't work on a phone or ipad try on a pc, my ipad app for it doesn't work properly. You can also order repeat prescriptions and book appointments with it.

[Jennymiddle in reply to AngieAsh]

Thank you I will pop down later and try

[AngieAsh in reply to Jennymiddle]

These might help if your receptionist is a bit clueless.

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/NHSEngland/thenhs/re...

[Jennymiddle in reply to AngieAsh]

Thank you so much I will go after work

[Nanaedake]

Get a copy of your results and post them here then people can help. Has the GP prescribed vitamin D? Ask GP to do vitamins blood tests if not already done and make sure you get vitamin D done at the same time.

Vitamin D

B12

Folate

Ferritin

Don't stop taking anything the doctor has prescribed without discussing it with doctor first.

Sometimes symptoms get worse before they get better as your body needs to adjust to new hormone levels.

[cjrsquared]

You are doing the right thing in reading and trying to learn. An endocrinologist (endo) is a Doctor specialising in the treatment of endocrine disorders. Sadly many of them are diabetes specialists and don’t really understand hypothyroidism. Your gp is being slightly idiotic starting you on 12.5 mcg levothyroxine as 25 mcg is the starting dose for the elderly or those with an underlying heart condition. The normal plan is to take levothyroxine for 6 weeks then have repeat blood tests and 25mcg increment rise in medication until TSH (thyroid stimulating hormone) is in the lower part of the range and symptoms have improved. It can take up to 6 months to reach a therapeutic dose. It is important to take levothyroxine on an empty stomach and not to eat or drink anything other than water for an hour afterwards. Hrt can influence uptake of levothyroxine so if in tablet form should be 12 hours apart from levothyroxine.

Do you know if you have autoimmune hypothyroidism? It is also known as hashimoto’s disease. This is diagnosed by having raised thyroid peroxidase antibodies on a blood test. If this is so, search for hashimoto’s disease and read about the benefits of a gluten free diet which can help.

Did your gp also check vitamins d and b12 as well as ferritin and folate. Low levels can reduce how well our bodies can utilise the levothyroxine by converting it into the active hormone. Levothyroxine is a prohormone an inactive form which is sometimes referred to as t4. The body then converts it to t3 the active hormone.

I know it is a lot to take in but you are on the start of a journey. Once you have your results post them on a new thread so members can help advise so you can regain health. Good luck.

[Jennymiddle in reply to cjrsquared]

Thank you so much for taking the time to reply, I think I will try and book an appointment to ask a few questions it does seem strange now that I'm starting on such a low dose when I'm neither elderly or have a heart condition. I'm only 48yrs. I really don't have a clue what I have been tested for I was just told I have hashimoto but not sure what the difference is. And given the tablets which she said to take half for a week then full one from them on but feel so bad so have started the full one 3 days in. I don't want the doctor to think I don't trust him but after reading all the posts I just don't believe I'm on the right dose. I will get my test results tomorrow and post them maybe that will give me some answers. Thank guys you have all been so helpful 😀

[Tasker in reply to Jennymiddle]

I was also started on just 25mcg at age 46 and with no other significant health problems - some doctors seem to be very cautious re starting doses. 8 weeks on and I've had to push quite hard to get an increase to 50mcg, but have now just started on that. Good luck as you start out on this journey; this forum has been invaluable to me in helping me understand things better, and will be to you too I'm sure.

[SeasideSusie Remembering]

Jennymiddle

You can learn a lot by asking questions on here, also you can have a read through ThyroidUK's main website (this is their forum) thyroiduk.org.uk/tuk/about_... Work through the purple menu on the left hand side, clicking on the relevant links.

25mcg is the usual starting dose for someone who is elderly or has a heart condition, otherwise it would be 50mcg, maybe even 75mcg. Starting with 12.5mcg is very unusual unless your GP has reason to think you would be very sensitive to it.

Levo isn't an instant fix. It takes 7 days for a dose of Levo to be absorbed, and up to 6 weeks for it to be fully effective.

You should have a retest 6 weeks after starting Levo, then an increase of 25mcg, then another test/increase after another 6 weeks, and this should be repeated until your symptoms abate and you feel well. 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.

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.

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, for an hour either side as absorption could be affected. Any other medication or supplements should be taken 2 hours away from Levo, some need 4 hours eg iron, D3, calcium, magnesium.

As for the different tests

TSH is Thyroid Stimulating Hormone. This is produced by the pituitary. The pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

It would have been high to diagnose you with hypothyroidism. The aim of a treated hypo patient generally is for TSH to be low in range, around 1 or below.

FT4 - T4 is thyroid hormone - thyroxine. It is a pro-hormone, a storage hormone. The FT4 tests measures the amount of free (unbound to protein) thyroid hormone you have. It would have been low when you were diagnosed. The aim of a treated hypo patient generally is for FT4 to be in the upper part of it's range.

FT3 - Free T3. T4 (the pro-hormone) converts to T3 which is the active hormone which every cell in our bodies need. Therefore it's very important to know our FT3 levels, unfortunately this is rarely tested and most doctors don't seem to understand it's importance, they tend to go by TSH only. The FT3 test measurse the amount of free (unbound to protein) hormone you have. The aim of a treated hypo patient generally is for FT3 to be in the upper part of it's range and in balance with FT4.

As far as vitamins and minerals are concerned, these need to be at optimal levels (not just in range) for thyroid hormone to work. We always suggest that members get the following tested

Vit D

B12

Folate

Ferritin

and to find out these levels before supplementing with anything. Some vitamins are water soluble and excess is excreted, eg B vitamins; however, some are fat soluble and excess gets stored and can cause toxicity, eg D3. Also, too much iron is as bad as too little. So knowing levels is important before supplementing.

It's also useful to know if you have autoimmune thyroid disease, which is where thyroid antibodies are present. If antibodies are high, this is Hashi's and the antibodies gradually destroy the thyroid. The majority of hypothyroidism is caused by Hashi's, but there are other reasons. Hashi's can bring it's own problems which need addressing so it's useful to have antibodies tested. There are two types - Thyroid Peroxidase (TPO) and Thyroglobulin (TG) but the NHS rarely tests TPO and almost never tests TG. If members are still unwell on a decent dose of Levo, we advise testing antibodies, privately if necessary with our recommended labs which can do fingerprick or venous blood tests at reasonable prices.

It's very unlikely that your doctor will know much about thyroid disease. They think it is easy and a little white pill once a day makes everything OK. The reality is it can be a lot more difficult.

Ask any questions you like, many members here are happy to help.

[shaws Administrator]

Did your doctor start you on half of levothyroxine at 25mcg.Or is it half of liothyronine (T3).

Usually it is 50mcg levo and then 25mcg increases every six weeks until our symptoms are relieved. If your dose is too low it can backfire and we feel worse.

All blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This keeps the TSH at its highest as it drops throughout the day and you may not get the rise you need or GP may reduce dose .

Endo is short form for 'Endocrinologist'.

Our aim is to have a TSH which is 1 or lower (some doctors stop increasing when it is 'somewhere' in the range. Ranges differ from lab to lab so we always ask and it is the figures in brackets after the result. i.e. Calcium adjusted 2.15 (2.20 - 2.60)

Ask GP to test B12, Vit D, iron, ferritin and folate. Deficiencies can also cause symptoms.

Always get a print-out of your results with the ranges so you can post if you have a query.

[Jennymiddle in reply to shaws]

Thank you so much for taking the time to reply, I think I will try and book an appointment to ask a few questions it does seem strange now that I'm starting on such a low dose when I'm neither elderly or have a heart condition. I'm only 48yrs. I really don't have a clue what I have been tested for I was just told I have hashimoto but not sure what the difference is. And given the tablets which she said to take half for a week then full one from them on but feel so bad so have started the full one 3 days in. I don't want the doctor to think I don't trust him but after reading all the posts I just don't believe I'm on the right dose. I will get my test results tomorrow and post them maybe that will give me some answers. Thank guys you have all been so helpful 😀

[shaws Administrator in reply to Jennymiddle]

I am afraid that doctors know very little. They are poorly trained.

Hashimoto's proper name is Autoimmune Thyroid Disease and it is because you have thyroid antibodies in your blood and they attack the thyroid gland until you're hypothyroid. They wax and wane and sometimes you feel 'hyper' and at other times hypo. Treatment is the same for either.

I shall give you two links:-

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

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

[Jennymiddle in reply to shaws]

Thank you so much I will take a look

[shaws Administrator in reply to Jennymiddle]

I found out to my surprise that doctors know less than members on this forum. Thyroiduk.org.uk was started by Lyn Mynott who had the same awful experience as most on this forum.

She started TUK in a shed in her garden.

You can become a member if you wish as the more members the better and it is only £20 per annum.

thyroiduk.org.uk/

[silverfox7]

I was started on 25 mcg about 30 years ago but that was the recommended dose then so either your doctor hasn't kept up to date or he is nervous as he hasn't done this before! More important is that he should have told you to have another blood test in 6 weeks as you most probably will need an increase and keep this cycle going until you are on the correct dose for you. Always get into the habit of asking for a printout of your results then you can post them on here for further advice. Always put the ranges as well as they differ from lab to lab. Without them we would only be guessing.

Lots more useful info on the Thyroid uk site and I see you have been given the link. Shout out if anything you don't understand. They also run this forum.

[Jennymiddle]

Thank you for taking the time to reply. I do feel quite sick since taking them and have no appetite so I'm wondering if this is common ? I went to the gym this morning but had to come home 10 mins later as I just didn't feel right and didn't want to push myself. Maybe it's just in my head don't want to sound like I'm moaning but I seem to feel worse now that i've started taking the tablets 😂

[Clairewalker751 in reply to Jennymiddle]

I felt nausea for a few weeks after starting Levo but I started on 100mcg I also stopped exercising apart from walking (I used to run) if you have hashimotos your body needs good fats and calories and exercise just burns up your T3. I've found this site amazing and convinced I'd still be very unwell without it good luck and make sure you post results x

[Jennymiddle]

Thanks for your reply. I do feel like the excersice is the one thing that is keeping me going at the minute, so to stop it I don't know what I would do and with the weather so bad it's. or walking weather here. I do suffer from anxiety so the gym help with that plus the weight gain. Do you know the best things to eat as that is really confusing me. Could I combine with good food and the gym.

Thank you

[SlowDragon Administrator in reply to Jennymiddle]

Anxiety is a symptom of having Hashimoto's

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

I think you need to push your GP to up the dose.

To start on just 12.5mcg is tiny. Even 25mcg dose is too small for majority. It knocks our own thyroid hormone production down, but doesn't offer enough replacement hormone

Ask that you can increase to 25mcg daily for remaining 4 weeks before next blood test, or possibly even 50mcgs

HRT increases our need for thyroid hormone. Take Levo as far away in time from HRT as possible

Definitely always get copies of all blood test results and ranges. You don't need a reason. They are your tests they are obliged to give you the results (and ranges).

As you have found already, many GP's do not know enough about how to manage this complex disease

Ask that they test Vitamin D, ferritin, B12 and folate. These are often too low and stop thyroid hormones working.

Exercise whilst so under treated is going to make you feel pretty rough.

Just walking (or perhaps yoga?) might be better until dose is up at least to 50mcg. Likely a bit higher

You can take the Levothyroxine at bedtime (or some even take in middle of night on a loo break)

Recent research suggests bedtime may be more effective

verywell.com/should-i-take-...

It must always be on empty stomach and nothing apart from water for an hour after

Yes on such a low dose your appetite may well be poor.

Levothyroxine is not a medication, its a replacement hormone. In the vast majority of cases we need it for life.

[Jennymiddle in reply to SlowDragon]

Thank you. I do take 25mcg now. My appetite has only been poor since Thursday when I found out, that's why I'm thinking it's more to do with me worrying than the tablets themself. I think I will still go to the gym for light excersise but not continue with the boot camp I also do 3 times a week. I just feel I need to excersise to keep me sain at the minute and it's wayyyy to cold to walk outdoors 😱 I'm hoping in a few days I start to feel better as like I said before I seem to feel a lot worse since diagnosed and started the tablets.