Feeing sad, no family time due to Extreme exha... - Thyroid UK

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Feeing sad, no family time due to Extreme exhaustion and burning acid feeling in legs.

Ally000 profile image
79 Replies

So today I went with family and friends to watch the red arrows. What should have been a pleasant and good memory making experience has pretty much reduced me to tears. I have suffered with thyroid for past 6 years. Just after my daughter was born it was discovered that my thyroid levels were dangerously high. After being given medication to bring it down, my thyroid went under active. So now on 100 of Levothyroin(apologies on spelling) I have been told my thyroid level is now correct. However, simple daily household tasks are becoming a major issue, I sleep during the day and feel just as tired. Then, back to today, walking (not far) to see the red arrows my legs built up with acid to the point where I thought I was either going to cry in front of everyone or just drop. The pain was liked I'd ran a marathon. But literally a 10 min walk! I really can't stand this much more! I've been to doctors previously and it's been a case of we can't do anything for you as there is nothing wrong?! Am I alone here feeling this down about situations similar to this. It rules my life. X

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Ally000 profile image
Ally000
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79 Replies
SeasideSusie profile image
SeasideSusieRemembering

Ally000 Can you post your latest thyroid test results, with reference ranges, so members can comment. Ideally you'll have

TSH

FT

FT3

TPO antibodies

TG antibodies

And also useful

Vit D

B12

Folate

Ferritin

You probably won't have them all but post what you can. If you don't have them then ask your surgery for a print out, in the UK we are legally entitled to them under the Data Protection Act.

Can you also clarify how much Levo you are taking, it won't be 20mg (milligrams) because it's prescribed in mcg (micrograms)

Ally000 profile image
Ally000 in reply to SeasideSusie

😂 sorry yes 20mcg. I haven't got an update of any of my readings as my doctor said that there was absolutely no reason for me to have them! Even though I asked. But I shall be repeating the above data information.

I had found a site where you can purchase a full bloods including B12, which I had asked my doctor for and he said there was no reason for being tested for this. Thank you for any advice. I've read so much over the last few years, but when I pop to my doctor and show him, he always tells me they aren't reliable source! Like asking for T3 bloods...answer no need!?

in reply to Ally000

Go to the Thyroid U.K. Site for link to reliable private labs. And note that Medichecks offers discounted lab rates every Thursday.

If the posted dosage is correct (20mcg of Levo??) - I'm confused even further! Have you always been on this dosage? Levo has a "starter" dose of 25 mcg. Your GP sounds like he need to be fired frankly - you are legally entitled to lab results - period. And there is simply too much missing info here to get a grasp of what is going on.

PS: when you get your next labs done be sure to fast prior (water OK) and no Levo for 24 hours beforehand.

Ally000 profile image
Ally000 in reply to

Ahhhh my brain is all over the shop. Apologies not a full story and slightly incorrect. I'm on 100 of levthyroxine sodium, take one every morning with magnesium 12mg, fluoxetine 20mg, methyl B-12 5000micrograms strength and lansoprazole 30mg. But on 20mg of amitriptyline take at 6pm at night. . I had been diagnose with fybromyagia after going private roughly 3 years ago. So when I go to the doctors and have my thyroid checked and it come back as "in range" he then concludes my exhaustion is down to my fybo. Which, for 3 years I've just accepted. But with the burning legs I've been getting I just googled and thyroid page came up at the top. This then made me think, maybe I'm trusting my "in range" but maybe it's not? Maybe a grasping at straws and extra hope that there is something in this?

Thank you for the advice on the recommended thyroid site info on blood tests. X

Spareribs profile image
Spareribs in reply to Ally000

Hi Ally000

thyroxine (T4) should be taken first (or last) thing away from any other medication, food or supplements, with a glass of water only - otherwise it just won't work properly.

Did you know you can ask for on-line access at your surgery and can make apporintments, do repeat prescriptions and now have access to your (own) test results? This forum is run on behalf of Thyroid UK thyroiduk.org/

If you can get your blood test results folk can try to help you.

Jane :D

SeasideSusie profile image
SeasideSusieRemembering in reply to Ally000

Ally - the fluoxetine, lansoprazole and amitriptyline won't be helping.

Magnesium must be taken at least four hours away from thyroid meds and magnesium is best taken in the evening as it's calming and can be too relaxing/make you sleepy taking it in the morning. And are you sure the dose is 12mg? A normal dose is around 350-400mg.

When taking B12 we need to take a good B Complex to balance all the B vitamins.

By the way, most of us Hypos suffer from low stomach acid and the Lansoprazole will lower it even more and you won't be absorbing nuteients.

Google for interactions with Levothyroxine and any of your other meds.

Levo should be taken on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc. Any supplements or other medication should be taken two hours away, some Ned four hours.

Pepekins profile image
Pepekins in reply to SeasideSusie

Just a note to mention I have taken thyroxine for many years and had a cup of tea almost straight after, with no apparent prolems. However I understand ideally it should be taken just with water.

MiniMum97 profile image
MiniMum97 in reply to Ally000

Levo should be taken on an empty stomach at least an hour before eating - I take mine first thing and then wait for my breakfast and coffee! It should also be taken 4 hours away from other medications and supplements - it sounds as if you are taking everything together? This will affect absorption and cause fluctuating thyroid hormone levels. Take your other meds and supplements in the afternoon or evening.

Lansoprozole will give you low stomach acid which is something people who are hypothyroid struggle with anyway.....and low stomach acid can cause heartburn and reflux. Low stomach acid can also stop you absorbing the nutrients you need which can make you feel unwell. You could maybe try stopping that if you can and trying some Apple Cider Vinegar diluted in a glass of water before meals and see how you get on. I know reflux is immensely painful so maybe use something like gaviscon if you are really struggling until you know if the ACV is working.

Definitely get your levels tested as others have suggested, and post the results back on here.

Your GP sounds like an arse by the way - you don't need a reason to want your blood test results, they are yours.

Ally000 profile image
Ally000 in reply to MiniMum97

I do take it all in one go normally with a massive cup of coffee to get me going. My heart burn and acid reflux has been horrendous. I'm not massive fan of taking the lansoprozole but the acid pain was so bad I just went with it.

MiniMum97 profile image
MiniMum97 in reply to Ally000

Definitely don't do that! Coffee definitely affects the absorption of levo. Take your levo as soon as you wake and wait an hour before eating or drinking anything other than water. Then wait at least another three hours before taking your other meds and supplements.

Do you suffer from anxiety - I find when mines bad, my reflux comes back? Also some people find that coffee aggravates theirs - maybe try leaving off coffee for a few days and see how you go?

Lansoprozole long term will not be doing you any favours at all.

greygoose profile image
greygoose in reply to Ally000

Well, I think you've just found a huge part of your problem! You might just as well not be taking any levo, as taking it with all that other stuff, AND coffee! You've just about cancelled it all out! :)

Have a look here to find out more about stomach acid :

scdlifestyle.com/2012/06/hy...

Ally000 profile image
Ally000 in reply to greygoose

My bloods would have arrived today at test centre, how long do they normally take for results?

greygoose profile image
greygoose in reply to Ally000

I'm afraid I have no idea. Sorry.

Ally000 profile image
Ally000 in reply to greygoose

Thank you anyway 🙂

greygoose profile image
greygoose in reply to Ally000

You're welcome. :)

Zillie profile image
Zillie in reply to Ally000

Coffee destroys thyroxine

Had a look at Chrysalis Effect??

Ally000 profile image
Ally000 in reply to Zillie

And that is probably why when I did a cleanse that I felt really good. As I wasn't allowed coffee or caffeine for 9 days. I've started as of 2-3 days ago taking levo just before bed. As I don't have coffee after 6pm. I assuming this is okay? I had no advice from doctor on taking my medication😢.

in reply to Ally000

"In range" is not enough info as the ranges are so broad. As SeasideSuzie said below it sounds like he's actually withholding info as he has limited knowledge on the topic - not at all unusual for the majority of gps I'm afraid.

Dee215 profile image
Dee215 in reply to Ally000

I was told I have fibromyalgia too. But there is no treatment for it.

Tiredmum75 profile image
Tiredmum75 in reply to Ally000

Look for interactions with the medication

Ally000 profile image
Ally000 in reply to

Also I did know about fasting and no levo? Is this normal advice given at GP before bloods?

SeasideSusie profile image
SeasideSusieRemembering in reply to Ally000

Most GPs won't say anything about this, it's a patient to patient tip to get the highest TSH.

SilverAvocado profile image
SilverAvocado in reply to Ally000

Although GPs often don't know it, the specialists who work on performing the tests do know it and its usually in the guidelines for the tests.

SeasideSusie profile image
SeasideSusieRemembering in reply to Ally000

Ally - it's obvious your GP doesn't want you to understand your test results, I think he probably doesn't know very much himself!!

My suggestion is to do a home fingerprick test that covers all the above

bluehorizonmedicals.co.uk/t... or

medichecks.com/thyroid-func...

Do the test early morning (no later than 9am), fast overnight (water allowed) and leave off Levo for 24 hours. This is a patient to patient tip which gives the highest possible TSH - needed when looking for an increase in dose or to avoid a reduction. Also, if you do this every time you can compare results accurately.

Levo comes in 25mcg, 50mcg and 100mcg doses. If you are taking 25mcg you are most likely to be very undermedicated.

To obtain your results from your GP you should try again at the surgery, don't ask your doctor just ask at reception. If they refuse, remind them that you are legally entitled to them under the Data Protection Act 1998 and you're sure no-one there wants to break the law. If that doesn't work then put in a Subject Access Request

ico.org.uk/for-the-public/p...

Scroll down to:

How do I make a request?

And if you show your GP any information from ThyroidUK you can tell him that it is NHS Choices recommended source of information about thyroid disorders.

Ally000 profile image
Ally000 in reply to SeasideSusie

Thank you so much. It was my error I'm on 100 levo, not 25. I take fluoxetine at 20. Now I'm on medicheck and there is one that's £69 that has mostly every test and other at £100 the more expensive one has TPOAb, I have zero idea of what this is? Should go for the more expensive? Also with the test, is blood from the finger enough or should I pay the extra to have it taken the normal way? Thank you ao much in advance.

SeasideSusie profile image
SeasideSusieRemembering in reply to Ally000

Ally -

TPO - thyroid peroxidase antibodies

TG - Thyroglobulin antibodies

I doubt if you've had these done with your GP. They are important because they will tell you if you have autoimmune thyroid disease aka Hashimoto's.

All the vitamins and minerals are important because we need to know our levels. Optimal levels of all of them are needed for thyroid hormone to work. If you are low or deficient we can tell you what supplements you need, the dose, and what level to aim for.

Your best choice is the full test costing approx £99 which I linked to with both companies.

You can get enough from a fingerprick, but some people find it more difficult than others. As it's a £99 test you might want to pay the extra for the blood draw this time, although if you failed with a fingerprick test they will send out a second one free of charge (Blue Horizon do). You might want to err on the side of caution the first time.

Ally000 profile image
Ally000 in reply to SeasideSusie

Thank you so much. I asked about hashimoto and dr said my thyroid was in range so why on earth would I need the test! Thinking Doctor is a plonker now! Thank you all so much. I've order test so shall I attach my results to this thread? Thank you again

SeasideSusie profile image
SeasideSusieRemembering in reply to Ally000

Thinking Doctor is a plonker now!

Oh my goodness, you are polite. I was thinking something very much worse :D

I've order test so shall I attach my results to this thread?

Best make a new thread with your results, this one will be several pages down and dropped off the radar by then. You can link back to this one if you like, or give some background information, and maybe fill in your profile. It's a busy forum so we don't always remember past posts, so it's good to remind us.

When doing the private test, make sure that you post it either Specal Delivery Guaranteed Next Day by 1pm or if just using first class post then post on a Monday, Tuesday or Wednesday only. It needs to arrive by Friday morning otherwise it will sit around waiting to be tested over the weekend and the blood will be no good by the Monday.

in reply to Ally000

You will want to create a new post to avoid getting lost in the shuffle here. Not familiar with "plonker" 🤔 - but if it means Dumb**s I am totally with your there 😂😂👍

Dee215 profile image
Dee215 in reply to Ally000

Sounds just like my dr

Dee215 profile image
Dee215 in reply to Ally000

I did the finger prick one and it was fine to get all the results back

jgelliss profile image
jgelliss in reply to SeasideSusie

You are so right SeasideSusie . We have to do things in order to be able to be optimally dosed to feel well . It's a shame on the Medical Academia that we have to go on and about to be dosed according to our well being . WHEN WILL THEY LEARN ????? Serum results fluctuates all the time . Symptoms which are much more telling are CELLULAR RESULTS ....Learn to trust the patients they know BEST how they fee not some paper with lab results . There is a time and place for labs no doubt . But not when lab results show patient is fine when infect patient is totally not fine and Dr's trust paper over patients . This has to stop . Lets hope empowering one another will change the way we get treated . OPTIMALLY AT LAST !!!!!

Ally000 profile image
Ally000 in reply to SeasideSusie

I've sent off bloods to medicheck, they will have arrived today via next day delivery. Do you know roughly how long before I see results? X

SeasideSusie profile image
SeasideSusieRemembering in reply to Ally000

I don't know how long Medichecks take but probably you will get them tomorrow. They send an email telling you they are available and you log into your account to see them.

I use Blue Horizon and sometimes I've had the results late afternoon of the day they were received.

Ally000 profile image
Ally000 in reply to SeasideSusie

Thank you🙂 I'm waiting here to actually see my results, which after countless blood test done by GP, this will be first time in 6 years I'll be able to see them! So a little excited, strangely 😂 Thank you again ally

Dee215 profile image
Dee215 in reply to Ally000

Ally, I am almost scared to reply because I was accused of hijacking someone's post the last time I did, but I need to say I am having almost exactly the same issues. I have the same symptoms as you, the gp won't listen, says it's all psychological and he can't wave a magic wand. I paid for a blood test from Blue Horizon because gp said I didn't need one. It came back with low ferritin and low B12. Gp gave me 6 b12 injections and iron tablets. Felt great for a fortnight then symptoms returned. Gp did another blood test and said well B12 is high now so it's not that. I can't tackle them, I don't have the confidence. I know I feel poorly, I know they won't help me. They just say you don't need this and that's not reliable. But I still feel ill and they say they can't do anything. I am missing out on family time, we are going on holiday tomorrow and I want to be great mum, joining in with everything, but I can't do it. I wish I could advise but I am just saying you are not alone. I wish I knew how to help us both. Really not hijacking just offering understanding and moral support xxx

humanbean profile image
humanbean in reply to Dee215

Dee215

I can understand about not having the confidence to tackle doctors. A lot of them can be absolutely vile when they want to be. It helps me to take my husband along to appointments with me, although I hate the necessity for doing it. They are much more polite when there is a witness. Another option is that you can record appointments if you want, and you don't need their permission. Whether you tell them you are recording is up to you. You could ask a new question about this.

Another thing you need to know is that you are legally entitled to copies of your blood test results. In fact, for £10 you are legally entitled to a copy of all the electronically held information on your GP record, and for £50 you are entitled to get a copy of your entire GP record, including copies of any documentation only held on paper. If you are interested in knowing how to do this, ask people in a new question.

I gave up on them about four years ago after I found out how many things I can do for myself without their permission - although I would agree it costs more than I'd like, but I think it is worth it.

Did you know that you can learn to give yourself B12 injections, and can buy the B12 ampoules, the needles, and the syringes online?

Quite a lot of people do this on the Pernicious Anaemia Society Forum on HealthUnlocked. You can ask for their help here :

healthunlocked.com/pasoc

Regarding paying for tests of your own, if you just remember that you are doing it for yourself, then you might feel better about it. We can give feedback on any thyroid-related tests and quite a few nutrients. And mineral and vitamin supplements can be bought without prescription from all sorts of places.

Ally000 profile image
Ally000 in reply to humanbean

Wow I didn't realise you can do B12 injections yourself. I find that really useful information. I think my problem is that I have just relied so much on my doctors information and he doesn't really have much of a clue. When I was first diagnosed it was first put down as postnatal depression, then after seeing a doctor who already suffered with her thyroid my problem was diagnose properly. She was an amazing help, and for 2 years I had ups and downs but could always speak with her. Unfortunately she has since left our local practice. 😓

humanbean profile image
humanbean in reply to Ally000

It's a common issue with people in the UK, I think. The NHS is "free" and we are taught to believe the doctor is always right and that we have to rely on them for everything health-related. It makes many of us feel helpless - or it had that effect on me, anyway, and I assume others feel the same.

I used to believe that the only things I could buy for myself in a pharmacy were the things on the shop side of the counter. Anything behind the counter in the pharmacy itself I believed was ALL prescription-only. Then, quite by accident, I found out that I could buy my prescribed iron supplements without a prescription. Once I knew that I was off and away in learning what I could do for myself. Finding out that I could get blood tests done privately without needing a doctor's permission, and without having to take out another mortgage, was the second thing I needed to know.

My health has improved immensely in the 4 years since then.

Another thing I found very helpful was buying a copy of my entire GP record for £50. It was money well spent, and I was able to get some missing info put into my GP summary record as a result. The change in attitude of my doctors has been amazing.

Ally000 profile image
Ally000 in reply to humanbean

I think I'm going to do that and pay for my file. I'd like to see what's in there that I'm not aware of. Hopefully this will be a great way forward and up. Feeling more positive today already x

humanbean profile image
humanbean in reply to Ally000

Don't expect too much from your records. Assume you won't find anything out, and then you won't be disappointed.

Some people have paid and then been told that their records were lost some years before. Although I am surprised at how many were lost in fires and floods or "some other surgery never passed them on" - I'm very cynical and just assume that lots of people are being lied to, probably for convenience, but possibly because there is something to hide.

You will almost certainly be asked for a reason why you want them. Be non-committal. I just said I was curious and wanted to keep a record for myself. I was so distrusting that I thought that if I told them why I wanted them the information I was looking for would have mysteriously vanished.

Member DJR1 has a special interest in people getting access to their electronically held coded records online (which is our legal right and is free), so you may want to read his/her posts and replies which you'll find here :

healthunlocked.com/user/djr1

When I applied for a copy of my entire GP record I wrote a letter :

Dear Sir/Madam,

I wish to make an application for copies of my medical records under the Data Protection Act 1998. I would like to see all of my records in all formats, and also wish to be supplied with photocopies of everything. Please could you let me know what the fee will be and send me your application form.

I look forward to hearing from you.

Yours faithfully

I've realised since I wrote it that it isn't worded terribly well, but it did the trick. I was never asked to fill in an application form in the end. They did it just on the basis of the letter. Remember that any time you ask for copies of your medical records you should take proof of identity with you - a passport or a picture driving license is ideal, plus an "official" letter showing an address.

MacG profile image
MacG in reply to Ally000

Hi Ally,

Just before you do pay for your records double check with your surgery whether you can in fact view your medical record online. I can do this through my surgery, but only because I spotted a tiny card in the reception area which said if you would like to view your medical record online please speak to the receptionist. I then had to get a password etc from them. I think that for some surgeries you could do this, but they are not being massively proactive in advertising it! This was supposed to be rolled out nationally so everyone could view their record but seems to have stalled somewhat.

Ally000 profile image
Ally000 in reply to MacG

Thank you I will do. They have started to do an online prescription order but my pharmacist is amazing and reorders them each month for me anyway. In fact it was my pharmacist that recommend me to look up forums.

Ally000 profile image
Ally000 in reply to Dee215

Thank you so much for this, it helps to know I am really not alone (not that I wish this on anyone). But feeling alone is possibly the worst feeling, along with people not understanding and just putting it down to laziness. If one more person says to me just get up and out, do more exercise get a hobby! I think I'd scream. I want, like you to spend quality time with my family. There are days my husband will take them out so I can rest, and when they come home all excited telling me what they've done I get upset with myself. That's when I feel down the most, purely frustrated with myself. Hopefully there will be light at the end of the tunnel. Finding this group has been amazing support. And haven't read any other threads yet. 😌 Enjoy your holiday xxx

Ally000 profile image
Ally000

Brilliant thank you all so much. Well I've paid for it all, have to go into email to activate seeing results online. I will post up here straight away. It's so nice knowing there are gorgeous people out there who care. It makes a hell of a difference. I'm a teacher so "plonker" is the worst it gets my end...if I use anything stronger it may start popping up in everyday vocabulary! #nojob 😂

Dee215 profile image
Dee215 in reply to Ally000

I am a teacher too!

Lulubelle1 profile image
Lulubelle1

I used to suffer with exactly the same problem, I take b12 now and it seems to have stopped it , my muscles felt like they had done a marathon just climbing the stairs, I understand that if you're low on b12 it restricts oxygen to the muscles, so it makes sense xx

Ally000 profile image
Ally000 in reply to Lulubelle1

Thank you for the tip. Can I ask how much B12 do you take now? I do take a chew B12 but not sure if the strength is right? X

Marz profile image
Marz in reply to Ally000

Jarrow Methylcobalamin B12 lozenges for under the tongue from Amazon 5000 or 1000 mcg. I would not suggest H&B from the posts I have read here 😊

Lulubelle1 profile image
Lulubelle1

My doctor gave me 100 mg a day , but I'm sure if you go to h&b you'll also get some good ones .. it takes a little while to kick in but I'm so much better xx

Lulubelle1 profile image
Lulubelle1 in reply to Lulubelle1

Sorry mcg not mg xx

SeasideSusie profile image
SeasideSusieRemembering in reply to Lulubelle1

Don't use H & B own brand of anything, they're full of cheap rubbish, as are supermarket and Boots own brand.

Decent quality brands are best sourced online.

Ally000 What B12 are you taking? Sublingual methylcobalamin lozenges or sprays are best as they bypass the stomach and get directly into the bloodstream. Any kind of tablet, capsule or chew will go to the stomach.

Ally000 profile image
Ally000 in reply to SeasideSusie

I take jarrow methylcobalamin B12 5000mg lozenges either chew or leave in mouth 1 a day

Marz profile image
Marz in reply to Ally000

Best to leave in the mouth until dissolved. 😊

SeasideSusie profile image
SeasideSusieRemembering in reply to Ally000

As Marz says, let it dissolve under the tongue, don't chew. And when taking B12 we also need a good B Complex to balance all the B vitamins.

Ally000 profile image
Ally000 in reply to SeasideSusie

What would you recommend for B complex? I honestly get so confused with all the vitamins to take😬

SeasideSusie profile image
SeasideSusieRemembering in reply to Ally000

I started off with Thorne Basic B. I now use Metabolics B Complex as it doesn't have any ingredients other than the active ones.

humanbean profile image
humanbean

Just to summarise (but without repeating all the actual advice people have already given you)...

There is a lot you can do to help yourself that will cost absolutely nothing.

1) Taking Levo separately from supplements, away from food, and away from drinks, other than water will help enormously. You'll absorb more of the Levo that way.

2) Write out a timetable for taking your Levo, vitamins, minerals, other supplements, eating food, drinking coffee, and write it into a new question asking whether you've got it right.

3) Remember that taking Levo at any time of day is acceptable if you can separate it from all those things I mentioned. Bedtime dosing is quite popular. (Wouldn't work for me - I like drinking tea just before bed, and I don't like going to bed with an empty stomach, but it works for quite a lot of people.)

4) Getting timing of testing right to maximise your TSH and minimise your Free T4 may help to get a raise in dose, or prevent a reduction in dose. Consistency is key to being able to compare results as well.

5) Many (but not all) of us get benefits from going 100% gluten-free. It isn't necessary to have autoimmune hypothyroidism or to have coeliac disease to get benefits. I don't have either of those things and yet going gluten-free has helped me enormously.

Ally000 profile image
Ally000 in reply to humanbean

Do you think taking my levo at night might help more? I do take amitriptyline at 6pm but I could take my levo just before I go to sleep? (10-11) I don't tend to drink tea or coffeee after 6pm.

humanbean profile image
humanbean in reply to Ally000

It might do. Don't be afraid to experiment. Meds for replacing low thyroid hormones aren't poisonous and you won't do yourself any harm. You might actually feel quite a lot better.

Don't take any other drugs or supplements at bedtime, just take the levo with sufficient water to make sure it goes into your gut and doesn't get stuck in your oesophagus.

If you always wake up for a pee in the middle of the night you could take your Levo then - that's another common solution.

If you do take Levo at night, and find it works well for you, then remember to do this with regard to testing :

Let's assume you have booked a blood test for Tuesday at 8am.

On Sunday, take your levo at night as usual.

On Monday morning, take your Levo at 8am, 24 hours before the blood test.

On Tuesday, get the blood drawn at your appointment at 8am.

On Tuesday, take your Levo at night as usual.

It won't do you any harm to alter the timing of one pill. Some people are known to take an entire week's worth of Levo once a week. It wouldn't appeal to many people, but it does happen.

And another thing to bear in mind - Levothyroxine is tested on healthy people. The usual test dose is a single dose of 600mcg!

Sugarplumb61 profile image
Sugarplumb61

Hi Ally,

I do feel sorry for you, I have been under active for 15 years, I sought out a private consultant via a friend of mine, unfortunately Dr Skinner is no longer with us, but he detected that I don't convert T4 to T3, so I was prescribed T3 as well. It sounds like you have a similar problem. Regarding the acid feeling in your legs, this may be to do with the fact that the brand of Lev you are taking perhaps you are allergic. Go back to your Pharmacy and try another brand till you lose that feeling. There is light at the end of that tunnel. But you will have to take control of your own treatment.

Ally000 profile image
Ally000 in reply to Sugarplumb61

My doctor doesn't do T3 test (at least he doesn't tell me if he does) I'm hoping with the paid blood test I will have clear picture of my health. I'd be more than willing to pay to see a proper consultant for this, as every penny is worth it's weight in gold when it comes to health. X

This sounds like me over the past few years.. being treated for hypothyroidism but feeling worse each month - an endless list of symptoms that's the GPs would do nothing about !!

I'm now 90 % recovered since I discovered that I had hypoadrenalism which has them caused the hypothyroidism but all symptoms where adrenal linked.. I'm now only self medicating on natural adrenal and thyroid supplenents and since Jan have started to have a life again .. it's taken 6 months to get 60% better but now I'm making plans for my future and avoiding the Gp who dismissed my diagnoses of hypo adrenalism from private specialist.. really could be worth you looking at this as a cause.

Ally000 profile image
Ally000 in reply to

I'm going to have to google this, honestly this forum has been a massive eye opener. And part of me is kicking myself for not looking up forums sooner.

Mandcol profile image
Mandcol

I felt so poorly on Levo, then after research realised I was converting t4 to t3. I stopped seeing my gp who clearly was never going to make me well and bought my own natural desiccated thyroxine which gives me t3 as well as t4 and I now have my life back.

Ally000 profile image
Ally000 in reply to Mandcol

Wow I've been reading a little about this NDT tbh didn't have a clue what it stood for until you mentioned above 😄. Where do you get this from? And are a lot of people on this? X

in reply to Ally000

Yes. NDT is an alternative to Levo - tho not at all commonly prescribed in the U.K. There are a few different brands out there some with less fillers. Often people try 1-2 types before finding the right one for them. (Where I live we only have ERFAs brand prescribed, but stateside there are 5 diff ones I believe) Many here order via Thailand as they are inexpensive and just as effective for some. One must research the topic and ask questions! Just like you are doing right now 😄

A couple of links worth reading:

stopthethyroidmadness.com/n...

hypothyroidmom.com/thyroid-...

PM me if you have any questions

Ally000 profile image
Ally000 in reply to

Thank you. I think once my results are done and I post them I can then work my way from there. Part of me is hoping there is an obvious underlying issue that the great people on here can see. It would make me feel less like it's in my head! (Which doctors have said!) or that it's just down to my fibromyalgia. 😓

Sugarplumb61 profile image
Sugarplumb61 in reply to

How can I buy NDT from a trust worthy source?

Sugarplumb61 profile image
Sugarplumb61 in reply to Mandcol

This sounds up lifting, where do you obtain your own natural desiccated thyroxine, Im getting T3 from my gp but I fear that it will soon be cut back on , it would be great to find out how I can be in total control of my health.

I've been told for 40 years all my illnesses were due to this or that, then 10 years ago my thyroid.. In January this year when I could no longer function as a human being.. with my body not closing down for sleep, not digesting food , constant urinating and more much more.. I had to start goggling and came across Dr.Peatfield. His book was written about me .. although its about the thyroid .. the adrenals and fatigue kept being mentioned.. the thyroid has 5 hormones , the adrenals over 50 so control much more of our body.. in fact so many functions.. and our female hormones are closely linked to them.. I was infertile due to my adrenals.. women who suffer several miscarriages or who have difficult pregnancies usually have fatigued adrenals .. giving birth can fatigue the adrenals and the medical profession do nothing about it because they do not have a pharmatcutical pill to push at us.. depression and stress are linked to the adrenals but they give us pharmatcutical drugs which fatigue the adrenals even more... my drugs are natural so must be called supplenents and can be bought in the UK over the phone.. I know which path I would take and I have. My friends are flabbergasted at the transformation from a sorrowful soul of 10 years to a healthy person who looks and fills 10 years younger ..

PM me if you need to..

Ally000 profile image
Ally000 in reply to

I've pm you x

Have you been diagnosed with neuropathy? I have type two diabetes and had burning and tingly

feet with too high sugar in the blood. Have you had a test for diabetes? If not you could ask the doctor or go for a free test with LLoyds chemist. With your thyroid problem he/she will direct you

to the correct course of action. Sometimes thyroid is associated with diabetes so it might help

to have the test done. Vitamin B12 deficiency can lead to pain in the legs but if it is in the calves

they should be checked to spot thrombosis. Think you should find another doctor in your practise

or go to LLoyds or NHS drop in where they have appointments in pharmacies to check on

medications and health issues.

Ally000 profile image
Ally000 in reply to

No not had diabetes test, however I've tested my blood sugar levels with a friends and they are in good range. I suffer with low blood pressure, which I've had since dot, but high resting heart rate. But I've read that's normal with low blood pressure. I do feel an urge/craving for sugar in mornings and later at night. Before thyroid issues I never had a sweet tooth. Always busy and neat size 8 even after birth of 1st child. Then after 2nd child with thyroid issues I have since gone to a size 14 with zero energy levels. I get so upset not being able to do normal things. I cut down work to 3 days a week last year to manage rest periods but honestly can't really afford to do that forever! I will double check diabetes though as it's another Avenue to look at. 😌

in reply to Ally000

That sounds familiar - it's funny so many women put on weight after giving

birth - they might not have thyroid or endocrine imbalance. Did you say you you were on levo and vitamin B 12 injections and iron but you went back to square 1

two weeks later? May be you have another type of vitamin deficiency - folate

or known as folic acid. If you take b12 without folate in food or folic acid 400ug

per day, the b12 may not work properly. Marmite is wonderful as it contains

the many vitamins which synergise, with other vitamins b and vitamin c.

That brings me to comment on another contributor who recommends vitamin c.

High doses of vitamin c of at least 1000mg help the adrenal glands. You can get

vits from boots not acidy flavoured in 250grms. You can take 4 of these a day

if you don't like the effervescent tablets in drinks. I like redoxon as it has a nice

flavour but boots do some which are ok in 1000gms. I sometimes take redoxon 1000mg of vit c with selenium and zinc . You can overdose on selenium but

zinc is not stored in the body. The large dose of vitamin c is an antioxidant

and helps the adrenal glands. If you have any problems with your menstrual cycle you should ask for tests for ovarian cysts, which are associated with thyroid

disease. You can have ultra sound which is a breeze. Finally coffee in particular

can affect your levothyroxine, rendering it ineffective. So if you cut out coffee

eat marmite and take supplements of vitamin c you have everything to gain

but nothing to lose. Tannins in coffee ,tea, red wine, beer can affect your

haemoglobin giving rise to anaemia. If you look up about marmite you will see how many vitamin bs are in it made from brewers yeast. it is now seen as

a preventative for infections, and helps energy levels.

Ally000 profile image
Ally000 in reply to

Thank you for all of that info. I love marmite too so that's a bonus. I'm on levo taking dissolvable B12 at moment. Have purchased the vitamin and thyroid test, so doing this in the morning. So will see what results are like. Ahhh I love my coffee also, is there a limit you would say? Like could I drink a couple a day? 😌

PS the acid build up in your legs after exercise may be lactic acid. Massage of legs upward motion from ankle to the knee and then upwards from knee front and backs up thighs may relieve

the symptoms. Another cause might be too much uric acid, causing muscle and joint pain.

This can be helped by lifestyle cutting down on beer. The gout society and other information on nutritition resource.org . Thyroiduk.org for better health gives a list of pharmacies which specialise

in NDTs with many brands and explains that the pharmacies will dispense the brand of your choice but the prescription from your specialist nhs or private must give the exact components

in milligrams of each brand before they will process the order.

The website has a list of each of the NDTS and their exact ingredients. Eg Nature-thyroid or Erf from Canada. The NHS might be

more progressive in some areas and give you a prescription but if local pharmacies won't supply them this website helps with fax online or telephone contact.

No need to reply.

Davenoz profile image
Davenoz

I suffer really bad acid reflux and muscle pain all over my body. For me I find following the Paleo AIP manages my symptoms best. Its going to sound like really bad advice but I found that stopping the levo got rid of the pain. I was diagnosed with ME and the pain was part of that diagnosis. I recently started levo again. Pain came back. It's starting to subside again now after a week without levo. It stays in your body for a couple weeks after you stop. I'd Deffo ditch the coffee and alcohol if you have reflux. I don't need ppi's if I eat the right things. It's a lifestyle change though. You'd be surprised what you can achieve through diet alone. Fodmaps is another worth looking at

Diabetes 1 can cause the pain in the legs,as well as parathyroid problems. If you have gut and abdominal gas this may be due to gluten in the diet in wheat rye and barley. It is also a cause

of hashimotos. A diabetes test as well as a test for parathyroid calcium levels and coeliac tests

may help you track down the cause of these symptoms.

Foods such as raw cabbage kale broccoli cauliflower may affect your iodine uptake in your meds as well as coffee and and alcohol. Cooked vegs with watr drained, boiled rather than steamed

will stop the vegs from affecting your thyroid. Soy soy milk lipoic acid in liver kidneys and heart

are also foods which may affect the uptake of iodine in your levothryoid. Alcahol is known

to affect your hormone thyroid levels and the uptake of your drug levo.

If you have difficulty in communicating with your doctor some Lloyds pharmacy will do a diabetic test for free. It takes courage to act independently, but it could help the cause of your problems.

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