Advice please for newbie

[Simonav]

Hi I am 25 years old, female. I was diagnosed hypothyroid last week and already feel overwhelmed. I can't think, I'm tired, feeling cold, thyroid swollen at front of neck, gaining weight, eyes puffy and dry. I take 25mcg levothyroxine, please help I feel very alone with this, thank you

[SeasideSusie Remembering]

Simonav

It's early days, you need to be patient I'm afraid. It can take many months with many dose increases to feel well.

You should 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 as absorption will be affected. Any other medication or supplements should be taken 2 hours away from Levo, some need 4 hours.

You need retesting every 6 weeks with a dose increase of 25mcg. Repeat these 6 weekly retests/increases until you feel well. 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.

You can read about Hypothyroidism on ThyroidUK's main website (this is their forum) thyroiduk.org.uk/tuk/about_... (work down the purple menu on the left hand side). Come back and ask questions about anything you don't understand.

Have you had thyroid antibodies tested, and vitamins and minerals (Vit D, B12, folate, ferritin)? All important pieces of the jigsaw. Testing antibodies will tell you if you have autoimmune thyroiditis aka Hashimoto's which is the most common form of hypothyroidism, and vitamins and minerals need to be at optimal levels, not just in range, for thyroid hormone to work.

[Simonav in reply to SeasideSusie]

I think I have Hashimotos

TPO antibodies 884 (<34)

TG antibodies >1000 (<115)

Ferritin 15 (15 - 150)

Folate 4.1 (4.6 - 18.7)

Vitamin B12 206 (190 - 900)

Total 25 OH vitamin D 19.3

Thanks

[SeasideSusie Remembering in reply to Simonav]

Simonav

Yes you do have Hashi's, as confirmed by your high antibodies. 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 (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

**

Hashi's and gut/absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies, which it appears has happened in your case.

Is anything being done about your nutrient levels? Anything on prescription and any further testing considering your low B12 level?

[Simonav in reply to SeasideSusie]

Thanks I've only been given 210mg ferrous fumarate to take 3 times a day

[SeasideSusie Remembering in reply to Simonav]

Simonav

I've only been given 210mg ferrous fumarate to take 3 times a day

So you must have been diagnosed with iron deficiency anaemia then. Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

Ferritin 15 (15 - 150)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

Your GP has been negligent ignoring these other results and you should either see your GP and ask why he has ignored them or see a different GP, get the appropriate treatment sorted, then consider making a formal complaint against the one who has been negligent.

Folate 4.1 (4.6 - 18.7) Vitamin B12 206 (190 - 900)

You are folate deficient with low B12. Check for signs of B12 deficiency here b12deficiency.info/signs-an...

You probably need intrinsic factor antibodies testing to see if you have Pernicious Anaemia, you may need B12 injections. If you are prescibed folic acid for the folate deficiency don't start taking it until furher testing has been done and B12 should be started before folic acid.

You can post on the Pernicious Anaemia Society forum for further advice and then discuss with your GP healthunlocked.com/pasoc

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."

And 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."

Total 25 OH vitamin D 19.3

You have severe Vit D deficiency and need loading doses of D3. Make sure that you don't come away with a prescription for 800iu, it must be the loading doses - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

As you have Hashi's, when you buy your own D3 it's best to get an oral spray for better absorption, eg BetterYou who do a D3 and a D3/K2-MK7 version.

**

As for the gut/absorption problems, these need addressing so that the supplements can be absorbed and nutrient levels improved, only when nutrient levels are optimal can thyroid hormone work properly. See SlowDragon 's reply to this post for information and links to help healthunlocked.com/thyroidu...

Doctors know very little about antibodies, Hashi's and the absorption problems that result, so you really need to become proactive and help yourself here.

[SlowDragon Administrator]

Make urgent appointment ( perhaps with different doctor) to get full testing for Pernicious Anaemia and loading dose of vitamin D, as detailed by SeasideSusie

We have to be patient with hormones. You will eventually be in much higher dose of Levothyroxine, but we have to step up in small steps of 25mcgs, wait while body adjusts. Retesting 6 weeks after any dose change

Obviously at the moment you also have multiple vitamin deficiencies to deal with too, so are feeling pretty rough.

You will need lots of rest, be kind to yourself. It's going to slowly improve

Gluten free diet highly likely to help. Read as much as possible about Hashimoto's

[Mollymalone79]

Hi Simonav, how are you feeling today? Its a lot of info to take in at once but it is spot on. You might not understand all the language and numbers at first but slowly you will see the improvements and want to learn more. Don’t be afraid to ask and take one day at a time, take care.