New girl on the block

[Newbyface]

Hi! I'm the new girl, recently diagnosed only this week! Feel absolutely awful. TSH 65...not 6.5 actually 65. T4 2.2 and Antibods...435! Terribly symptomatic and still in a state of shock. Any advice at this point would be invaluable. Thanks x

[shaws Administrator]

Welcome to our forum and members will respond.

I was also undiagnosed, despite many visits to doctors/specialists/A&E etc. and not one did a blood test for hypothyroidism. My TSH was 100.

How unwell we feel doctors just don't know.

I assume the doctor has prescribed 50mcg of levothyroxine for you. A test should be taken every six weeks until your TSH is 1 or lower and free of clinical symptoms.

Blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards. This helps the TSH to be at its highest as the TSH seems to be the only result they look at.

Ask GP to test B12, Vit D, iron, ferritin and folate and make sure you always get a print-out of your results with the ranges for your own records and you can post if you have a query.

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

Levothyroxine should be taken first thing with one full glass of water and wait about an hour before eating. Food interferes with the uptake of T4 (levothyroxine).

[shaws Administrator]

You have an Autoimmune Thyroid Disease due to you having thyroid antibodies. Going gluten free can help reduce antibodies as they wax and wane.

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

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

[SeasideSusie Remembering]

Newbyface Your high antibodies confirm 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.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin which is a protein thought to trigger antibody attacks. Supplementing with selenium L-selenomethionine 200mcg daily can also help reduce antibodies.

chriskresser.com/the-gluten...

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

**

Hashi's can cause gut/absorption problems and often vitamins and minerals are low. It's a good idea to test

Vit D

B12

Folate

Ferritin

and supplement any deficiencies/low levels. All need to be at optimal levels for thyroid hormone to work.

When posting any test results, always include the reference ranges so they can be interpreted. Ranges vary from lab to lab some need the ranges from the lab which carried out your tests. Also, as there is Total T4 (TT4) and Total T3 (TT3) as well as Free T4 (FT4) and Free T3 (FT3), we need to know which test has been done. TT4 and TT3 don't tell us much, it's FT4 and FT3 which are important.

[Newbyface in reply to SeasideSusie]

What other factors affect the fluctuations in symptoms. It seems that over the past three weeks this has become a problem. I have been off work with stress and anxiety. The week before I returned to work I noticed my face was puffy, then the brain fog, slowing down. It's all happened so quickly! x

[SeasideSusie Remembering in reply to Newbyface]

As I'm not Hashi's I have no personal experience and I only know about the antibodies causing fluctuations. When they attack they can cause you to experience hyper symptoms. This is temporary and when things go back to normal you swing back to hypo. Temporary dose adjustment of your thyroid meds can help. If you read the links I posted there is lots of information to help you understand Hashi's.

[Newbyface in reply to SeasideSusie]

Thankyou x

[Josiesmum in reply to Newbyface]

Puffy eyes and brain fog are common symptoms of gluten sensitivity. Try cutting it out for a couple of weeks to see if symptoms improve. Make sure you eat plenty of veggies/fibre to make up for the fibre you're missing from wheat.

[Newbyface]

Thanks for the info! The ranges were all well out of acceptable values. I can't quite remember. The other tests you mentioned are all in range however my cholesterol at the moment isnt😞X

[Treepie in reply to Newbyface]

In range is not the same as optimal which is one reason why Seaside Susie says always give the range when you post.Do not accept "normal" without getting the detail.

[Newbyface in reply to Treepie]

Hi yes I understand that as being a renal nurse myself I do have understanding of interpreting results. Obviously very early days for be and may be some times before optimal is achieved. I believe it isn't all about the numbers it's about how the person feels. Guess that's I have to also keep in mind for myself from now on.

[Treepie in reply to Newbyface]

sadly ,the docs go by numbers and take little account of how you feel these days.

[Clairewalker751 in reply to Newbyface]

High cholesterol is a symptom of Hashimotos too casual are low vit levels and low stomach acid look into healing your gut x

[SlowDragon Administrator]

Always get actual results and ranges. Keep good records of test results, dose taking etc

If you post test results for vitamin D, folate, ferritin and B12 members can advise.

What dose of Levo were you started on?

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

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

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

6 weeks after starting or changing dose you will need retesting

All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after.

With Hashimoto's it very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut, then likely hidden food intolerances may be causing issues, most common by far is gluten.

Changing to a strictly gluten free diet may help reduce swings in levels and reduces symptoms

Very very many of us here find it really helps slowly lower antibodies, helping heal gut

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

[Newbyface in reply to SlowDragon]

Hi

Thanks for the advice.

I have been started on 50mcg of levo only on Wednesday. The puffiness in my face is beginning to disappear but the brain fog and slow speech still remains and I am shattered. I don't want to wait 6 weeks to up it. I was virtually depleted of all T4.

I have already started to convert to a gluten free diet. Anything to get the antibodies down. The upper range was 65 mine are 435! This worries me.

I have followed advice and take the medication In the morning but not sure f I should start taking it at night time. As its early days am a little overwhelmed by everything.

My folate, Vit d, B12, iron and ferritin are all ok.

Looking back I've always had a problem with bloating, but never took it any further....maybe if I had? Who knows?

[SlowDragon Administrator in reply to Newbyface]

Post your vitamin results and ranges if you have them. Ok is rarely the same as optimal with thyroid disease.

Vitamin D, we need at at least 70nmol (around 100nmol is better)

B12 above 500, higher is better

Ferritin at least half way through the range

[437jd]

Hi Newbyface, I can't offer you any advice like some of the great people on here but I know you're in good hands. Big hug.

[Puska]

While this illness makes you feel rubbish as long as you are on treatment and being monitored you will get there. As long as the antibodies have been identified as the cause then don’t fixate too much on the number you have. I’d be happy with 465 - mine were greater than 1600 - they stopped counting and the report read simply >1600 where upper limit was <100.

[silverfox7]

Don't try to speed things up. It doesn't work like that. You arexstarted on a low dose to get your body used to it and it gradually reaches its maximum level in your body after 6 weeks so then you are re tested and most likely you will need another increase so you keep doing this until you are on the correct dose for you. If you retest early you don't get the actual reading that medication will give you so if you start another increase before that then in effect you have two increases going on at the same time so this could put you in danger of becoming over medicated which is t good-trust me! So the 6 week rule is important and patience is needed.

[Newbyface in reply to silverfox7]

I know but just so symptomatic x

[silverfox7 in reply to Newbyface]

Just a phase that hopefully you will improve on but also improvement can lag behind results so look out for that as well.

[Hypo51]

Hi newbyface, it does take time to feel better, my tsh was 48 and did I feel like rubbish, and only now started to feel better, I was diagnosed end of may, but I've had loads of support and advise on here, it's so good to be part of this forum, I can't help with results and such but you will get lots of responses from people who can,

[Clairewalker751]

Hi newbyface I was diagnosed in February with a TSH of 40 and antibodies in the 1000s my doctor started me on 100 levo I'm now on 150 but on my request and I've had private blood tests following the excellent advice on here I feel 100 times better already! Read loads and follow all the advice izabella Wentz the thyroid pharmacist is a really useful read x

[Newbyface in reply to Clairewalker751]

Hi Claire thanks for the advice. Would your GP not do the tests? Have you started a gluten free diet as many have said it helps with the antibodies. What are your antibodies like now, have they reduced? Sorry for all the questions x

[Clairewalker751 in reply to Newbyface]

Hi Newbyface, GP told me the lab won't test T3 if TSH is withing range even if she requests it, all they test is TSH because that's what they you on, so now she's prepared to use my medichecks blood results because they give a far better picture! Yes I've gone gluten and dairy free and taking selenium and working on other Vits as although within range as far as NHS are concerned they are not optimal. Seaside Susie is brilliant at but levels in here!! And yes my antibodies have come down drastically, not within range yet but coming down from the 1000s now in the 300s within 7 months I keep my TSH surpressed too!

[Kazbe in reply to Newbyface]

Hi Newbyface

My antibodies were 450(34) I've gone almost all gluten free I'm getting there I do feel much better for it ! Increased my Levo slowly and now getting all my vits and nutrients optimal ! These people on this forum have been amazing support and knowing I can ask a question and someone will help is so reassuring 😃 I hope you soon feel much better take care x

[Newbyface in reply to Kazbe]

Hi! That's great!

When were you diagnosed? So I take it your antibodies have dropped? That's great news and what I'm aiming for too. Well done x

[Newbyface]

Hey that's brilliant and really good for me to read because it's proof that all these steps, all though overwhelming are a step in the right direction x

[Jessiepup]

My TSH was over 200(yes,hundred) and I had to insist on a test. It was 20 years ago. Thyroxine didn't work at converting to T3 until I did the following:

Cut Gluten 100%

Look into Magnesium at gotmag.org (their Facebook group is magnesiumadvocacy) vitamin D is not your friend unless you have optimal Magnesium levels (nhs don't to the right test)

Cut sugar and preservitives

Don't accept you are iron deficient on ferritin alone-they must test the full iron assay - my issues were actually copper related

Thriroxine works a treat now, I have good health.