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Thyroid UK
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Newly diagnosed

Hi,

I wondered if anyone can help. I was finally diagnosed with underactive thyroid around 4 weeks ago. Had symptoms for over a year but was told it was anxiety. I was certain there was something physically wrong and only after pushing for my own peace of mind did I eventually get tested. My ft4 was 10 and my tsh high. At the time I knew nothing about hypothyroid and didn't ask any other questions regarding levels. I was prescribed 25mg levo and been taking it for around 3 weeks. I have noticed slight improvements in some symptoms. Mainly insomnia and appetite.

After doing lots of research I had my bloods retested my tsh is 23 and my tf4 is 12. My doctor isn't concerned about the high tsh only the ft4. But it seems to indicate I'm fairly hypo? I also requested the vitamins and minerals people recommend on here. Which supposedly were all fine. I asked in particular for vit b12 as I have alot of the symptoms. My level was 287. Which the doctor said is within range. However after researching it seems low? She suggested I eat foods high in b12 and didn't recommend supplements. However im considering supplementing with the betteryou oral spray. So any advice on this would be greatly appreciated. Also are they're any other vitamins I should take along side?

I've been tested for hashimoto but the results aren't back yet. I did start a gluten, dairy, soya and egg free diet 4 weeks ago as I have intolerances and bad digestive/gut issues. Which I have noticed a slight improvement in since cutting these out. (celiac test was negative and I didn't want to start eating gluten again for test)

Im going to ask for a print out of all my results but I wondered if anyone had any advice. Its all so confusing and there's so much to take in. I feel like such a pest recently with my doctor but I have been so unwell I need to get better again.

Thanks in advance x

31 Replies
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Being ill for a year before diagnosis is not uncommon

A TSH that high means your very hypothyroid

25mcg is a miniscule dose that barely treats a fly ...50mcg is correct starter dose retest should be 6 weeks after initial dose and dose raised by 50 mcg every 4 weeks after

Correctly treated

TSH will be 1.0 or below

FreeT4 should be around 19 (10-22)

Freet3 which is the vital test should be 5 or 5.5 (3.2 -6.8)

What other illnesses do other family members have right back 2 generations inc aunts and uncles etc

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Thank you for your reply :)

The doctor started me on a small dose because I was suffering with severe anxiety which she said levo could make worse. However she did talk of an increase to 50mg so I will hopefully be starting soon.

My mum has rheumatoid arthritis and type 2 diabetes, my uncle on mums side also has type 2 diabetes. Other than that I don't have a lot of info or know of any other health issues within the family.

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50mcg is correct starter dose retest should be 6 weeks after initial dose and dose raised by 50 mcg every 4 weeks after

Typo alert - dose should be raised by 25mcg at a time, not 50mcg.

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Recently theres been postings stating 100mcg is rec starter dose ..seems theres lots of schools of thought ...given furthur info from OP i agree 25mcg increases are best because it sounds like adrenals may be severely stressed

I suspect its Hashimotos since thats Auto immune and mother has Rheumatoid arthritis which is auto immune as is Diabetes ...other family members may have died early from cardiac issues or other auto immune illness ...all are inherited although exact triggers etc not yet really researched

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My little sister has also just been diagnosed hypo today. I'm quite shocked. She only got tested because I had it and heard it can be genetic. I'm hoping I've saved her a whole host of symptoms by catching it early. Altho I suspect we may both have hashimoto

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She should be interested in your TSH, because it indicates that your FT3 - the most important number - is low; and that she put you one the wrong dose to begin with. It was too low, and has shut down what little production your thyroid was managing, but wasn't enough to replace it. Doctors just do not get it. Any of it! :(

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I'm getting that impression even after a few weeks! Her words to me today were I've not to worrtly about the tsh it could be 100 and it wouldn't be a problem :S

I don't think my FT3 has even been tested

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How does she work that out? Does she actually know what TSH is? Once you are on thyroid hormone replacement, it doesn't matter how low it goes, but if it goes high, it means you're under-medicated. I think she's a little bit confused, there!

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Diane17884

I asked in particular for vit b12 as I have alot of the symptoms. My level was 287.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

Do you have symptoms of B12 deficiency - check here b12deficiency.info/signs-an...

If so, take a list of your symptoms to your GP and ask for further testing for B12 deficiency/pernicious anaemia. Your B12 is low in range, your GP shouldn't be going purely by the fact that you fall within the range, she should take any symtoms into account.

Do not supplement with B12 until further testing has been carried out.

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Check out NICE Clinical Knowledge Summary > Initiation and Titration of Levothyroxine

cks.nice.org.uk/hypothyroid...

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 if that is where you feel well. See Thyroxine Replacement Therapy in Primary Hypothyroidism pathology.leedsth.nhs.uk/pa... scroll down and you will see in the box

TSH Level ..... This Indicates

0.2 - 2.0 miu/L ..... Sufficient Replacement

> 2.0 miu/L ..... Likely under Replacement

When you have a print out of your results, post them on here along with their reference ranges.

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Thank you for replying. Vit b12 and hypo symptoms are very similar. And also suffering from anxiety I feel my doctor is beginning to think I'm just an over anxious patient. I'm not sure if she would agree to do further testing. She was fairly satisfied that my levels were fine. Everything seems such a fight when it comes to thyroid and doctors :(

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Diane, I’d say you need to see another doctor in the practice if that’s possible. Your current doctor doesn’t apparently seem to have a clue about wonky thyroids! Anxiety is a symptom of underactive thyroid - so replacing your thyroid hormone deficiency with levothyroxine will likely start to fix that. It won’t make it worse!

Where do these doctors go to medical school? I despair sometimes, I really do... :(

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I may actually consider it. But thank you it's reassuring to hear as I was concerned about an increase in anxiety. It's so frustrating, I just want someone who knows what they're doing and get the correct help without having to fight for everything.

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Thanks for the replies everyone. I'm going to phone the doctor tomorrow and get my levo increased to 50mg and see what her reaction is to further b12 testing. If not I will try supplementing

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Hi - regarding the anxiety (palpitations etc?) did they test your iron levels too?

Also you could ask for an active B12 test (Holotranscobalamin is more accurate)

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Yes I had iron, folate, ferratin and b12 tested. All supposedly fine. Although haven't been given the levels yet bar the b12

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Yes, we recommend these are all tested & to get your numbers and re-post for folk to help. Also Vitamin D, but should be OK this time of year if you go in the sun a bit :) - Your surgery should provide an on-line service where you can check your test results, book appointments etc. A good way to help monitor & improve your own health. :D

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I'm going to request a print out and will definitely post when I have them. Oh that sounds great I will see if my surgery has this. Thank you. I haven't been able to get a lot of sun due to feeling so unwell and living in a flat but I do try sit out when I can. However I do suspect I am low in vit d

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More often than not hypothyroidies are low in most vitamins/minerals, Vitamin D supplementation was hugely beneficial to me (& others).

For more information about testing pernicious anaemia - have a look on the PA forum healthunlocked.com/pasoc

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I totally agree you need to se another doctor. You won't get well based on the advice of this one. What does she think TSH range is for? I would be bed bound with a TSH of 23 and also such a low B12 even if in range is dreadful. Needs to be nearer 1000. I am permanently on B12, methylcobalamin 5000 per day. It is water soluble so you cannot overdose and Vit D level is also very important, should be minimum 100. I have been hypo since 2007 and had raised antibodies since 2013 and only improved after taking advice from here, good vitamin levels and gluten free diet. Even then it takes a while to feel better. Hope things improve for you. NHS is very much DIY and doing my own blood tests, Medichecks or Blue Horizon, meant I was in control!

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Thank you so much for your reply. They're have been days I am bed bound and still spend a lot of time in bed at the moment. I'm very weak and shaky and have to pace myself. My muscles are so tired and sometimes feels like my legs are about to give way. At one point I struggled to brush my own teeth I was so weak. I'm so sick of feeling sick. My mental health is suffering along with a host of other awful symptoms. I've been off work for around 4 months now.

This site has been brilliant for info so far it's great to actually read and speak to people who know what they're talking about!

Is your methylcobalamin prescribed by your doctor? I ordered a vit d oral spray 1000 iu which I will start as soon as its delivered. My doctor refused to test for vitamin d and just suggested I supplement as I'm in Scotland and don't get a lot of sun.

Im glad to hear you have made improvements it gives me hope that it's possible :)

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I buy Jarrows methylcobalamin lozenges and take a multi B alongside. Most people are VitD deficient and we certainly don't get enough no matter how much sun we have!!

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Thank you :) I'm going to purchase Jarrows now, is 1000mcg a safe amount to take? Is it advisable to take a b multi alongside? If so could you recommend one?

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I take 5000 ! and also Jarrows B right complex. I do 2 full blood tests each year with Medichecks or Blue Horizon to check all levels: B12, folate, iron , ferritin, Vit D (I take vit K with the D) TSH, T4, T3 and antibodies. I have long since given up on getting the right info via NHS,. If they don't test it they don't have to treat it! Most docs haven't a clue re VIts levels and how low levels are no good for those with thyroid issues and especially useless if like me you have antibodies (Hashimoto's disease- but they prefer to ignore them) cos they have no idea how to treat/deal with you!

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Start taking at least 200mg of vitamin C in split doses every single day plus at least 200mcg of magnesium glycinate or malate or at a pinch oxide 3 times a day to help heal adrenals etc

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I have suspected adrenal fatigue for a while but as you are no doubt aware doctors don't recognise it.

I was taking 200mg of magnesium citrate before bed to help relax muscles and sleep but stopped to see if my gut issues improved but they didn't. Is magnesium citrate okay? As I have some here already. I will also order some vitamin c.

Thank you very much I really do appreciate all the replies and help

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Magnesium citrate is not really recomended but it will address constipation which is typical in hypo so finish it

Suggest you order mag glycinate 2 bottles at pipingrock.com its cheaper even with shipping to import from them ....so long as your contents do not exceed £15 customs cannot charge you VAT ...you might want to check if they have vit c cheap too

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I seem to have the opposite problem. I suffer mainly from diarrhea with the odd bit of constipation. Whether it be due to anxiety, thyroid, adrenals or even leaky gut who knows. I feel like I'm falling apart lol

Oh fab thank you again I will deffo have a look :)

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Its highly likely you are gluten intolerant or actually coeliac ...hashis and gluten go hand in hand ...to reduce antibody levels going totally gluten and even dairy free is vital

Do also check very very carefully that not one single piece of cookware is aluminium or non stick coated ...use only definite cast iron or stainless steel or glass

Not slow cookers , george foreman type grills, pod coffee makers...phone your water supply company and ask if they use any form if aluminium salts or flouride in their treatment works

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I have always suffered with egg intolerance since I was little but seems to have escalated the last few years. I'm now intolerant to almonds, celery and just recently milk. I decided to go gluten, dairy and soya free after reading a lot about hashi and decided it wouldn't do me any harm. I do think there is already a small difference which is encouraging.

I did check the fluoride levels and from what I can gather no fluoride is added in Scotland. I'm only drinking bottled water, reckoned the purer the better. I haven't heard anything about aluminum before?

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Just Google aluminium poisoning and aluminium allergy water in Scotland is full of aluminium if I remember rightly if your cookware is aluminium or non stick get rid fast

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I will have a Google thank you for your help :)

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