Worried about symptoms : Hi I am newly registered... - Thyroid UK

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Worried about symptoms

Jenni87 profile image
19 Replies

Hi I am newly registered, I am worried about my symptoms. I understand I am currently undermedicated but the way I have been feeling is strange. List of symptoms is below:

Salt cravings

Palpitations and racing heart

Tiredness

Increased thirst

Recurring bladder infections

Joint pain

Eczema

Vitiligo

Hair loss

Eyes feeling heavy, dry and gritty

Weight gain

Dizziness

Heavy periods

Diagnosed 2011

Taking 150mcg levothyroxine

Thanks for feedback.

October 2017

TSH - 6.2 (0.2 - 4.2)

Free T4 - 13.9 (12 - 22)

Free T3 - 3.6 (3.1 - 6.8)

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Jenni87 profile image
Jenni87
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19 Replies
Nanaedake profile image
Nanaedake

Most people on't feel well until their TSH is around 1.0 or a little lower. Your symptoms are fairly common in people with hypothyroidism but some of your symptoms could be low vitamin levels which are very frequently seen in people with thyroid conditions.

Have you had thyroid antibodies tested? Do you have Hashimotos?

Ensure you get a thyroid blood test every 6 weeks and adjust dose until you reach your optimal level. Doctors are very often satisfied if we are anywhere in range but most people need to have their TSH around 1 to feel well.

Always take levothyroxine on an empty stomach with no food or drink (except water) for one hour. If you take other medicines or supplements leave at least 4 hours between.

If you're taking antibiotics for bladder infections, check for interactions between thyroid medication and ensure you leave enough of a gap between the thyroid meds and the antibiotics.

If you've had vitamin levels tested then you are welcome to post them here and people will make helpful suggestions. Joint pain, for example, could be low vitamin D. If not, then ask your doctor to check them next time you have a blood test.

Vitamin D

Vitamin B12

folate

Ferritin

TPO and Thyroglobulin antibodies

Jenni87 profile image
Jenni87 in reply to Nanaedake

Thyroid peroxidase antibody 279 (<34)

Thyroglobulin antibody 356.3 (<115)

Jenni87 profile image
Jenni87 in reply to Nanaedake

No antibiotics

Nanaedake profile image
Nanaedake in reply to Jenni87

Has your doctor explained that you have Hashimotos thyroiditis? Doctors usually call it autoimmune thyroid disease. 90% of thyroid disease is caused by autoimmune thyroiditis I believe. You can read more about Hashimotos on the thyroid UK website.

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

Definitely worth getting vitamin levels tested as people with Hashimotos are often deficient.

SlowDragon has good advice about improving gut function which is more often than not affected by Hashimotos.

Jenni87 profile image
Jenni87 in reply to Nanaedake

Thanks I had vitamins tested, do I post them?

Nanaedake profile image
Nanaedake in reply to Jenni87

Yes, there are good people on this forum who can help.

Jenni87 profile image
Jenni87 in reply to Nanaedake

Vitamin D total 47.3 (25 - 50 vitamin D deficiency. Supplementation is indicated)

Ferritin 32 (30 - 400)

Folate 2.2 (2.5 - 19.5)

Vitamin B12 241 (190 - 900)

Taking 800iu vit D since 2013, now taking 1000iu

No longer taking iron

Nanaedake profile image
Nanaedake in reply to Jenni87

Why have you stopped taking iron, was your prescription stopped? Ferritin needs to be at least 70 or mid-range for us to feel well and for levothyroxine to work well.

What was your vitamin D level when you were diagnosed deficient? If it was under 30 you should have recieved loading doses. 1000iu is still insufficient to raise your level quickly enough.

I'm going tag SeasideSusie for her great vitamins advice. If she isn't available to respond then read her posts to other people to find out what you need.

Jenni87 profile image
Jenni87 in reply to Nanaedake

Thanks iron was stopped by haematologist because ferritin post infusion was 187.

Vit D level was below 30 when diagnosed

Nanaedake profile image
Nanaedake in reply to Jenni87

You should have had loading doses of Vit D then. You can read one of Susie's posts in this link. You'll need to keep scrolling down to the bottom to read about vitamin D.

healthunlocked.com/thyroidu...

What has your doctor said about these results? You need to ask him/her why you are still deficient despite supplementss and why your iron level has fallen again. Then you need to get sufficient supplements and then maintenance doses to keep your levels good. Everything needs to be mid-range and B12 needs to be top of range for us to feel well and for levothyroxine to work well.

Your folate and B12 is under or low in range so those need help too. Important to check out B12 deficiency before supplementing folate.

Jenni87 profile image
Jenni87 in reply to Nanaedake

The GP has said I am iron deficient due to heavy period which I have had since I started them (age 13) and I get clots during my cycles. Also pain and bleeding from other parts of my body, a nurse practitioner says likely to be endometriosis. I also have untreated polycystic ovaries.

Nanaedake profile image
Nanaedake in reply to Jenni87

All the more reason to monitor closely and take maintenance doses I would have thought but you need to discuss with the doctor. Read the advice and guidelines in the link I included above first.

greygoose profile image
greygoose

Salt cravings probably means that your adrenals are feeling the strain. Adrenals need salt, so give in to the cravings and get more salt into you.

Vitiligo is a separate autoimmune disease, not a symptom of low thyroid.

You are very under-medicated, but a lot of your symptoms could be due to low nutrients.

Jenni87 profile image
Jenni87 in reply to greygoose

Vitamin D total 47.3 (25 - 50 vitamin D deficiency. Supplementation is indicated)

Ferritin 32 (30 - 400)

Folate 2.2 (2.5 - 19.5)

Vitamin B12 241 (190 - 900)

Taking 800iu vit D since 2013, now taking 1000iu

No longer taking iron

greygoose profile image
greygoose in reply to Jenni87

OK, yes, they are all low. That explains a lot.

But your doctor is wrong. Your iron isn't low because of your heavy periods. Your periods are heavy because of your low iron. Raise your ferritin, and your periods could improve.

SeasideSusie profile image
SeasideSusieRemembering in reply to Jenni87

Jenni87

Vitamin D total 47.3 (25 - 50 vitamin D deficiency. Supplementation is indicated Taking 800iu vit D since 2013, now taking 1000iu

I think you need to be asking your GP why, after 4 years supplementing, are you still Vit D deficient. If your original level, in 2013, was below 30 you should have been given loading doses. 800iu is totally ineffective when looking to raise a level, it's barely a maintenance dose for someone who has a reasonable level to start with, and unfortunately increasing to 1000iu hasn't helped much.

The recommended level, according to the Vit D Council, is 100-150nmol/L. To reach this level you are going to need 5000iu daily for now. Give it 3 months and then retest. Once you've reached the recommended level 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, for better absorption you might want to consider an oral D3 spray such as BetterYou. They do D3 and also a combined D3.K2-MK7 which you might prefer then it's only one supplement instead of 2.

**

Ferritin 32 (30 - 400) No longer taking iron

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 really need an iron supplement and as your level is so low you should ask for an iron infusion which will raise your level within 24-48 hours, tablets will take many months.

You can also 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...

Have you had a full blood count and iron panel done to see if you have iron deficiency anaemia, it often happens with such a low ferritin level.

If you are prescribed iron tablets take each one 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.

**

Folate 2.2 (2.5 - 19.5) Vitamin B12 241 (190 - 900)

Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an... then I think it would be a good idea to post on the Pernicious Anaemia Society forum for further advice as your B12 is too low for me to feel comfortable suggesting you self supplement. healthunlocked.com/pasoc Quote your B12, folate and ferritin results, full blood count and iron panel if carried out, plus any signs of B12 deficiency you may be experiencing. Whatever they advise you can discuss with your GP.

You will certainly need folic acid for the folate deficiency but this shouldn't be started until after further investigations have taken place and you may need testing for Pernicious Anaemia.

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."

**

Thyroid peroxidase antibody 279 (<34)

Thyroglobulin antibody 356.3 (<115)

Your high antibodies mean that you are positive for 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 (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.

Read and learn about Hashi's so that you can help yourself, most doctors dismiss antibodies as not importand and don't know how Hashi's affects the patient.

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 often resulting in low nutrient levels, as yours have been. See SlowDragon's previous post about how to help with these problems which includes information and links

healthunlocked.com/thyroidu...

thyroidrose profile image
thyroidrose

Hi there, a word about heavy periods - I had them beginning with the onset of Hashi/Hypo a few years ago and I finally beat them back by having a D&C (luckily no issues were found) and a Mirena fitted at the same time as the D&C. Might be worth considering for you so you can finally get your iron issues resolved. I did have spotting continually during the first 2 months after Mirena was fitted but my GYN prescribed 2 months of Lo Lo Estrin on top of the Mirena and that cleared everything up. I have been cycle free since July. Ferritin back up to 80 at last check.

Jenni87 profile image
Jenni87 in reply to thyroidrose

Thanks I am not allowed a coil to be fitted and I don't fit the requirements for a D and C

thyroidrose profile image
thyroidrose in reply to Jenni87

Bummer, sorry to hear it. Also under-medicated hypothyroidism can cause heavy periods so maybe once you get your thyroid hormone dose right the heavy periods will stop for you. Best of luck!

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