Can anyone offer and advice? I'm newbie on this site

[alfie365]

Hi test results in April of TSH 8.35 F4 11.4. ferritin 14. Taking 25mg Levo, iron supplement daily and 180mg antihistamines - feel lousy and still getting strange rashes and hives (started before taking levo). Can anyone offer advice before I go back to Dr?

[Jackie]

Hi Too low a dose I think, but anyway for thyroid and the correct treatment, essential to have TSH, T4 and Free T3 tested with the essential ranges ( vary )To start with , frequent re tests and rises in meds until stable, Your .TSH too high , if your bloods are OK you should then feel better.GP will not treat Ferritin at that level but it is too low, Best is Spatone, sachets from Amazon, preferred by Endo`s.You also need the other autoimmune, hormonal tests, Vit D ( corrected calcium if d low ,before treatment, re test both on treatment in 3 months), B12 + foliates, needs to be high in range and lastly Diabetes. retests annually, these have similar symptoms to thyroid disease.Rashes common with under treatment. Try also and get a reverse T3 as if high, it means definitely autoimmune thyroid disease, mostly is any way.

Best wishes,

Jackie

If you wish to reply to a specific post, click on "Reply to this " under that post.

[alfie365 in reply to Jackie]

Thank you - I got a bit mixed up and posted reply by answering to my question!! See below! A

[marram]

Hello, alfie365. and welcome to the Thyroid UK support Forum. We are all sufferers or have someone very close to us who is, and for many of us this is the first time anyone has really given us any information or help.

Looking at those results, your TSH was definitely high, and your FT4 was low - indicating that you were hypothyroid. It is also obvious that you were very much in need of that iron supplement! Was the iron prescribed by the GP?

Was this blood test taken before you started the Levo? That is an extremely low dose of thyroxine, but he may have wanted to see your iron go up a bit before he gave you any more. It is certainly important to have another lot of blood tests done, to see how your levels are now, ready for when you see him again. When you see him, please ask him for the results and if possible, try to get the ranges as well, as labs vary and the ranges can help see what your situation is. Then put them on here and you will get some feedback, because we are well aware that GPs are busy, short of time and sometimes information is not given.

All the same, in any range your levels certainly pointed to being hypothyroid and your ferritin was low. In your place I would definitely want to be walking away from the doctor with an increase in my thyroxine, because 25mcg is a totally inadequate amount.

The rashes and hives are very common in hypothyroidism, I can't seem to get rid of mine at the moment, and optimal treatment should help with your skin problems, but the important thing is that you do need to be optimally treated, may take a little time but you are starting right.

If you just want to let off steam or talk about what is happening to you you, you can do a 'blog' about yourself and how you feel, and you can find people who have many of the same experiences as you, and who have an understanding of how you feel.

Keep looking on this website, but also go to have a look at the main website because there is a lot of information on there which can help you to become more knowledgeable about your condition, and therefore more proactive about your treatment.This is the link to the main website:

thyroiduk.org.uk/tuk/index....

If you look at the left the pink drop-down boxes have a wealth of information and advice. It is no exaggeration that for a huge number of people,Thyroid uk has helped them to chang their lives.

Looking forward to hearing from you again with your latest results or just if you feel like a chat about how you feel.

(If you would like to reply to any of the answers or comments, then if you click on 'Reply to This' so the person who wrote the comment will be notified that you have replied.)

I hope you find this community as helpful and supportive as I have. Try not to be overwhelmed by the huge amount of information, and take it a little at a time!

Marie XXX

[alfie365 in reply to marram]

Thank you - I got a bit mixed up and posted reply by answering to my question!! See below! A

[callia]

Hi you will find this site helpful.but remember each and everyone of us are so different.so there are varied approaches to the way we are treated .i take 200 levoyhyroxine 20 liothyronine and vitamin d3 .i seem to have a much better quality of life on this combo .my biggest bit of advice would be dont accept your symptoms if needs be demand to see a specialist.my doctor tried to manage my symptoms for 17 years although she did the best she could i wish i had been sent to specialist earlier.

[alfie365 in reply to callia]

Thank you - I got a bit mixed up and posted reply by answering to my question!! See below! A

[alangardner]

welcome to the site alfie365 , you will find that the help, empathy and knowledge that you can get from ALL on this site it will empower and give you the strength to get to where you deserve to be ..... it has helped me so much I cannot express my thanks to all ..... I only hope that I can put back to others the same in the future [ even if it is only empathy and understanding .....good luck and remember you are never alone while on this site ....alan

[alfie365 in reply to alangardner]

Thank you - I got a bit mixed up and posted reply by answering to my question!! See below! A

[galathea]

Clearly under medicated. You are aiming to get tsh below 1. 25 mcg is a very cautious starter dose. You should be monitored every 6 weeks an the meds increased till tsh in less than 1,

A more realistic dose would have been 100 mcg a day. Refer your doc to the British national formulary, which is the book on his desk..., you can look for free on line at the bnf.

And g et yourself a oopy of the dr toft book, understanding thyroid problems. £5 from chemist or amazon.

The doc cannot dismiss dr toft.....

G

[alfie365 in reply to galathea]

Thank you - I got a bit mixed up and posted reply by answering to my question!! See below! A

[alfie365]

Hi everyone, thanks for the welcome and advice

a little more about myself - hope I don't bore you!!

Early April I went to one of the Drs in our practice following an earlier appointment with the nurse where I almost broke down. Anyway had a chat with Dr, told her I was constantly exhausted and at weekends would go to bed after only being up 2 hours, out of breath after doing the most simple of things like walking up the stair, pegging out washing, my arms and legs felt heavy, itching all over - worse at night including feeling like something was crawling over my skin, strange rashes and lumps (as mentioned previously), hair falling out, cheeks bright red, reaction to heat (I have never like being in the sun), fingers swelling - I haven't been able to wear my wedding ring for months etc etc. At this point I had already been on over the counter antihistamines for about 2 months).

Dr decided to send me for blood test. Day after my test received call from surgery to say they wanted me to go back for a ferritin test, well I'd never heard of this and was a bit puzzled. Blood appointment made for next clinic - in meantime had a funny do at work where blood sugar dropped to 3 (girl I work with is diabetic and tested by blood with her gizmo) so went to Drs and asked if this was normal and did I need more tests as I was due to have bloods done next day. He told me it was ok and not to worry about sugars as my they had tested for diabetes and this had come back fine, but my chlosterol was raised! I asked if he would explain ferritin - he then told me blood cells were too small and therefore not carrying enough oxygen round bdy etc and the ferritin tests would give more info. Then he told me about my TSH 8.35 and T4 11.4 results, I didn't even know what these were never mind been tested for them - I said oh my mum had under-active thyroid could I have inherited it from her? I was told that tests didn't confirm I had under-active -thyroid, but that it looked like I might develop it, and that would re-test in three months. I guess I was rather naive and just left his room. I had bloods done next day and day after received a phone call to say there was prescription waiting for me for iron tablets, I asked what my result was and was told 14. So I started on the iron that night. Over the next few days my itches and rashes got gradually worse. I made another appointment to see Dr after work (this time another Dr in the practice, as its pot luck who we get). When I got there bang right on cue I had another episode and he could see the rash and lumps with his own eyes instead of the photographs I had been taking! He prescribed me a stronger antihistamine. I asked this Dr over thyroid results (by now two weeks had passed) and said If I carry on like this I was going to go round the bend! then he prescribed me 25mcg Levo, although I did get the feeling it was to shut me up. He did give me the form for further blood tests and ticked the following boxes

TFT

TPO Antibodies

Total IgE

Specific IgE - can't read what he's written underneath this.

I think I will have to ask if I can have the other tests as mentioned in the replies above?

Since taking Levo - I can honestly say some days I have felt worse then ever, and don't feel like I function till around lunchtime. I have an occasional day where I feel great only to be followed by a couple of really really bad days... Also since taking Levo my sleeping has gone haywire - I cant get to sleep until very late, which is infuriating as I am so tired, then awake at 3 - 4 am. Went back to Dr and was asked if I was depressed (have had a history) I said not really just fed of of lack sleep/exhaustion and fed up feeling like a hypochondriac!! (I am not normally one to go to Drs willy nilly). Was given sleeping pills for two weeks, I finished these last week and so it begins again!

Before I go for bloods do I have to stop taking Iron and Levo? I usually take Levo as soon as I wake up can be anytime from about 4am, I take my iron mid morning. In order to give myself the best chance of getting better?? I now only drink de-caff tea and coffee as I read this can affect the absorption of iron. I have also stopped eating bread, and anything with wheat flour as I believe this may sometimes have effects with thyroid?? please feel free to advise if I have misunderstood any of this.

Sorry for the saga.

Alison xx

[galathea in reply to alfie365]

Hi Alison,

You got it right about not eating gluten. Vitamin C helps you absorb iron. NEVER take thyroid meds before a test, always take them after. If you can leave 24 hours between meds and test, even better.

You might do better taking the thyroid meds at night, many do. The worry about giving you such a tiny dose is that its enough to stop your thyroid from trying, but not enough to help you feel better.

Ideally you would be tested And raise your meds every 6 weeks. How long have you been on 25 mcg?

G xx

[alfie365 in reply to galathea]

Hiya

I started Levo 25mcg on 17th April, had bloods taken this morning so will be interesting to see what happens next... watch this space.

I like the idea of taking meds at night - then at least I can have a brew and something to eat when I get up!

A

[Jackie in reply to alfie365]

Hi Alison, most of us have the run around, stand firm! Itches etc, are often thyroid., especially under treated Lavender bath helps a little.lack of sleep can be Hypo or Hyper but very different. Thyroid often worse after starting treatment.Do not take any thyroid drugs before bloods, ( or Beta Blocker) in the early days you need 6 weekly blood tests, T4,FT3 and TSH, with rises in drugs, often increase in T4 and some T3, depending on the blood results. it takes a while to feel right Iron needs retest in 3 months to check the levels, it does not effect the blood test. You may find the GP will not prescribe a high enough dose of iron/ferritin. It should be in well in range. otherwise have a sachet of Spatone, ( Amazon) with it.The Ige test is to show caeliac disease, but often not reliable. If the test is negative and you think you have a problem, the best way is to have 6 weeks on the Caeliac diet, this has been well researched and is known amongst docs Ferritin must be taken when said on pack, depends which one, some must be without food, some must not be near food. Important.You are aiming to feel well. Most people need T4 in top third of range and Free T3 near the top of range for this.Incidentally Ferritin is just the chemical /Latin name for iron.

Best wishes,

Jackie

[alfie365 in reply to Jackie]

Thanks I took your advice and didn't take my Levo before blood tests this morning. Will be interesting to see what comes back

It makes me feel more human after reading some of he horror stories on this forum, so pleased I stumbled across it. I will def stand my ground and feel I am armed with info to be able to stand up for myself.

A

[Jackie in reply to alfie365]

Good, best wishes,

Jackie