Hi new to forum

[maddie_m]

Hi

I was diagnosed with primary hypothyroidism in 2012, never felt completely well on levothyroxine or levothyroxine with T3. I feel like giving up taking it because no matter what dose I take how I feel never changes. Symptoms remain the same - hard stool, dry skin, tiredness, puffy eyes, breathlessness, getting the sighs, muscle cramps and twitches, joint pain, bone pain, heavy periods, cycles all over the place, depression, low stamina and my family have said they no longer want anything to do with my health despite it affecting me so badly. At time of labs below I was taking 200mcg levothyroxine and 10mcg T3. Any advice appreciated about how to take things from here.

TSH - 2.98 MIU/L (0.27 - 4.20 MIU/L)

FREE T4 - 14.9 PMOL/L (12.00 - 22.00 PMOL/L)

FREE T3 - 3.4 PMOL/L (3.10 - 6.80 PMOL/L)

++THYROGLOBULIN ANTIBODIES - 296.3 IU/ML (<115.00 IU/ML)

++THYROID PEROXIDASE ANTIBODIES - 203.5 IU/ML (<34.00 IU/ML)

[SlowDragon Administrator]

Has any medic explained you have Hashimoto's also called autoimmune thyroid disease, as proved by high TPO antibodies

Hashimoto's often/usually affects our digestive system, causing low stomach acid and then low vitamins and very commonly food intolerances- usually gluten

Very many find changing to gluten free diet reduces symptoms and eventually may lower antibodies

thyroidpharmacist.com/artic...

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

Do you have test results for vitamin D, folate, ferritin and B12, with ranges. If these are too low we struggle to use thyroid hormones

Your TSH is too high (should be one or less) and FT4 too low (should be in top 1/3rd, atleast 17)

What dose are you on? How long on this dose? Are you still taking T3

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. T3 12 hours prior

Bone broth is good for gut

thyroidpharmacist.com/artic...

[maddie_m in reply to SlowDragon]

I take 50mcg levothyroxine now

[Clutter]

Maddie_m,

You are undermedicated to have TSH 2.98 and should request a dose increase. FT3 is very low in range and it is low FT3 which causes hypothyroid symptoms so it would be more helpful for T3 dose to be increased to 20mcg to raise FT3. If your GP can't do that a 25mcg Levothyroxine dose will help raise FT4 and FT3.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies and can improve digestive issues and constipation.

chriskresser.com/the-gluten...

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

Ask your GP to check ferritin, vitamin D, B12 and folate which are commonly low or deficient in hypothyroid patients. Low iron/ferritin can cause heavy periods, low vitD causes joint and bone pain.

Supplementing magnesium citrate can help with muscle cramps but it needs to be taken 4 hours away from Levothyroxine and T3. Bedtime is best time as magnesium is a relaxant. Magnesium oil spray and Epsom Salt baths also relax muscles.

[maddie_m in reply to Clutter]

FERRITIN 8 UG/L (15 - 150 UG/L)

VITAMIN D 22.7 NMOL/L (<25 NMOL/L severe vitamin D deficiency. Patient may require pharmacological preparations)

FOLATE 2.7 UG/L (4.6 - 18.7 UG/L)

VITAMIN B12 174 PG/L (180 - 900 PG/L)

[Clutter in reply to maddie_m]

Maddie-m,

It's really not surprising you don't feel well with all those deficiencies. What has your GP prescribed?

[maddie_m in reply to Clutter]

Hi I have been prescribed vitamin D3 800iu and ferrous fumarate 210mg and I am to take 1 tablet a day. Nothing for folate or B12.

[Clutter in reply to maddie_m]

Maddie-m,

Your GP is useless. If there is another GP you can see at the practice please do so.

B12 and folate are deficient. You will need pernicious anaemia ruled out as a cause of B12 deficiency because if PA is confirmed you will need lifelong B12 injections to manage it every 2-3 months. If you are B12 deficient due to vegetarianism or veganism you will need B12 injections to raise B12 and will then be expected to supplement methylcobalamin to maintain B12 levels.

GP should prescribe 5mg folic acid daily to raise folate. B12 injections should be initiated 48 hours prior to starting folic acid.

healthunlocked.com/pasoc are the experts on PA, B12 deficiency and folate deficiency so you should pop over there for advice how to tackle your GP to get the proper treatment.

Vitamin D is severely deficient and 800iu is totally insufficient to treat deficiency. Your GP should refer to local guidelines or the NICE CKS recommendations for treating vitamin D deficient adults cks.nice.org.uk/vitamin-d-d...

Alternatively you can buy vitamin D3 without prescription. Either follow the NICE guidelines for dosing or try 10,000iu D3 daily x 6 weeks and then reduce to 5,000iu alternate days and retest in 3-4 months. Once vitD is around 100nmol/L you can reduce dose to 5,000iu alternate days as a maintenance dose through to April. Vitamin D should be taken 4 hours away from Levothyroxine and T3.

If you buy on Amazon please use the affiliate link healthunlocked.com/thyroidu...

Ferritin is deficient which usually means you have indicate iron deficiency anaemia. Usual treatment for iron deficiency anaemia is 3 x 210mg Ferrous Fumarate. Take each iron tablet with 1,000mg vitamin C to aid absorption and minise constipation and retest in 4-6 months. Iron should be taken 4 hours away from Levothyroxine.

[SlowDragon Administrator in reply to maddie_m]

800iu is a tiny dose, only suitable for a well person as maintenance dose. Instead you need loading dose as per your local CCG guidelines

At least 5000iu daily and retest after 2-4 months. You could get your own - a mouth spray vitamin D by "Better You" is good as it by passes poor gut issues

Suggest you see another GP within the practice if at all possible

Before supplementing B12, folate and B complex you need full testing for Pernicious Anaemia and intrinsic factor

See also lots of SeasideSusie posts on vitamins.

I've seen dire levels recently, but yours are about the worst.

Getting vitamins optimal will really help, increasing dosecof Levo too

But you almost certainly need to be gluten free, you could be coeliac, but majority if us are gluten intolerant. Don't think it worth hanging in fit testing, just change over to strictly gluten free diet and try it for 3-6 months - see if it helps

Bone broth can help heal gut too

thyroidpharmacist.com/artic...