Hi: I'm new and I think I'm undermedicated. I... - Thyroid UK

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pinkjazz profile image
pinkjazz
โ€ข34 Replies

I'm new and I think I'm undermedicated. I have no motivation to do anything. Lying about in nightclothes. Tired. Unsteady when standing. Dizziness. Low concentration. Please advise. Diagnosed hypothyroid 2013. Thank you

TSH *9.6 (0.2 - 4.2)

Free T4 12.7 (12 - 22)

Free T3 *3.0 (3.1 - 6.8)

Ferritin *25 (30 - 400)

Folate *1.2 (2.5 - 19.5)

Vitamin B12 *102 (180 - 900)

Vitamin D total 35.5 (25 - 50 deficiency)

Diagnosed iron deficient Nov 2013 not taking iron which was stopped Jan 2017

Diagnosed folate deficient Nov 2016 told to stop folic acid until after B

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pinkjazz
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Clutter profile image
Clutter

Pinkjazz,

Sounds as though you may be undermedicated. If you post your recent thyroid results and ranges members will advise.

pinkjazz profile image
pinkjazzโ€ข in reply toClutter

TSH *9.6 (0.2 - 4.2)

Free T4 12.7 (12 - 22)

Free T3 *3.0 (3.1 - 6.8)

Clutter profile image
Clutterโ€ข in reply topinkjazz

Pinkjazz,

You are very undermedicated to have TSH 9.6 and deficient FT3 while taking Levothyroxine. Ask your GP for a dose increase.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 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 dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Nanaedake profile image
Nanaedake

Hello and welcome pinkjazz. Have you got copies of your most recent thyroid blood tests? If so then post them here and people will help you work out what's going on. When you post blood test results then include the laboratory ranges as labs vary.

If you've had vitamin levels tested then post them here too.

pinkjazz profile image
pinkjazzโ€ข in reply toNanaedake

TSH *9.6 (0.2 - 4.2)

Free T4 12.7 (12 - 22)

Free T3 *3.0 (3.1 - 6.8)

Ferritin *25 (30 - 400)

Folate *1.2 (2.5 - 19.5)

Vitamin B12 *102 (180 - 900)

Vitamin D total 35.5 (25 - 50 deficiency)

Diagnosed iron deficient Nov 2013 not taking iron which was stopped Jan 2017

Diagnosed folate deficient Nov 2016 told to stop folic acid until after B12 injections started

Diagnosed vit D deficient Dec 2013 taking 800iu

Nanaedake profile image
Nanaedake

Crumbs, no wonder you feel unwell. Everything is low. What has your GP said about these and when did you last contact him/her? When were these results received?

pinkjazz profile image
pinkjazzโ€ข in reply toNanaedake

I have an appointment on Friday to talk about these. They were done by previous GP surgery who have forwarded on the results to my new surgery. Thyroid taken in October 2017. Vitamin and minerals taken Wednesday last week

TSH110 profile image
TSH110โ€ข in reply topinkjazz

pinkjazz you poor thing you must feel dire. The plantar fasciitis (foot pain is a symptom too) can you not demand the doctor speeds up those injections for goodness sake they are negligent leaving you in such a terrible condition on the stupid excuse that they want you not to looose weight. I was like a rake with untreated hypothyroidism I was always like a rake I presume I am just naturally thin like my father was and he had no thyroid problems at all. I did put on stones when I was so ill I nearly died of this illness as it still went undiagnosed. It was very very unpleasant.

I hope you get sensible treatment and an increase in dosage soon. Your appetite will become normal again once all your problems with dosage and deficiencies are properly addressed.

Maybe you could go with someone to the appointment so they dont push you around

Good luck ๐Ÿ€โ˜˜๏ธ๐Ÿ€

pinkjazz profile image
pinkjazz

Also having soreness in my foot arches? I haven't done a lot of walking lately

Nanaedake profile image
Nanaedakeโ€ข in reply topinkjazz

Your TSH is much too high and you need to increase your dose of levothyroxine by 25 mcg or 50mcg if you can tolerate it and then retest in 6 weeks time and so on until your TSH is around 1.

Make sure you take levothyroxine on an empty stomach, fasting with a full glass of water and then no food or water afterwards (except for water) for one hour for best absoption.

Leave 4 hours before taking any other supplements or medication. Some supplements and medication can interfere with levothyroxine absoption. Milk also lowers absorption.

800iu is not enough vitamin D to treat a mouse, let alone a deficient hypothyroid patient. You need a proper dose of vitamin D. If your levels were below 30 when you were first diagnosed you should have had loading doses and then a good maintenance dose higher than 800iu.

As for iron, I don't understand why GP stopped it. You could have had a maintenance dose of that too but even more worrying is the fact that your B12 and folate are so below range that your GP should have ruled out perniciou anaemia and checked for coeliac disease. Were any of these things done?

Here is a post to SeasideSusie advice on vitamin supplement. Print out and take a copy with you to your appointment to make sure you get the right advice.

healthunlocked.com/thyroidu...

Sounds like you need to make a complaint to your old GP surgery about your level of care. To be left with these low levels of vitamins and not be investigated for symptoms was irresponsible. Nothing will change unless people begin to make complaints so please don't hesitate. Direct your concerns to the practice manager in the first instance. Copy to your local Healthwatch.

pinkjazz profile image
pinkjazzโ€ข in reply toNanaedake

Thanks for replying, I was on much more before so I can tolerate very high doses all at once. Levothyroxine always taken on an empty stomach several hours away from food and drink and other medications and supplements.

Vit D was under 30 when diagnosed and I was taken off iron after ferritin was boosted to 197 after infusion.

GP testing me for coeliac and I tested positive for intrinsic factor antibodies

Nanaedake profile image
Nanaedakeโ€ข in reply topinkjazz

I don't think you should have been taken off iron. See the information in SeasideSusie's post which I've given a link to for iron deficiency. You need a maintenance dose. If you tested positive for intrinsic factor are you now having B12 injections from your new GP?

pinkjazz profile image
pinkjazzโ€ข in reply toNanaedake

Yes been prescribed them but GP surgery has been unable to fit me in to have them

Nanaedake profile image
Nanaedakeโ€ข in reply topinkjazz

Oh dear. How long will you have to wait? I think you need to tell them it's urgent since there can be serious consequences to B12 deficiency.

pinkjazz profile image
pinkjazzโ€ข in reply toNanaedake

End of the year

Nanaedake profile image
Nanaedakeโ€ข in reply topinkjazz

Could you raise your levels of B12 by taking sublingual methylcobalamin 1000mcg a day or a mouth spray? Discuss with your GP. It's not a treatment used in the UK but it's used in some other countries and might be worth a try while waiting for injections. For example, in Japan, methylcobalamin is almost exclusively used unless there is some factor why it can't be.

Why don't you get advice from HealthUnlocked Pernicious Anaemia forum? They would be able to tell you what's best to do. Some people take supplements between injections if they're not frequent enough I believe.

melville999 profile image
melville999โ€ข in reply topinkjazz

I got this.plantar faciitis.feet going flatter partly due to wearing converse.I am hypothyroid too and have been undermedicated.I found walking in clogs helped a lot.so I walk to do my shopping in standard Swedish orthopaedic type clogs.wear converse the rest of the time.yes occasionally there is a horrible tearing pain on the sole of my feet if I dont do this but it has been totally successful in relieving the facitis.also gluten free diet.helped as plantar facitis was precursor to finger arthritis.gkuten free helped stop arthritis totally and helps thyroid.good luck.

pinkjazz profile image
pinkjazz

I am taking 50mcg levothyroxine because GP doesn't want me losing weight but I've gone from 47kg to 53kg within 3 months and I don't tend to gain weight very much!

Nanaedake profile image
Nanaedakeโ€ข in reply topinkjazz

Honestly, I really don't understand these GP's they seem to think thyroid hormone is some kind of weight control item to make people lose or gain weight!!

It's much more likely you were underweight because you were ill from poor nutritional status which is malnourishment because your body is not getting what it needs!! With those vitamin levels I'm surprised you are still walking around and not keeling over. Just noticed above that you've said you've tested positive for intrinsic factor so you have a couple of autoimmune conditions which is likely the root of low weight gain.

50mcg of levothyroxine is a starter dose and putting on weight without correcting those deficiencies is not going to help you very much as you will simply lose muscle tone and have all sorts of symptoms as a result of being undermedicated. It will also increase your vitamin deficiencies to be hypothyroid which will make you more malnourished.

With thyroid disease we often have gut dysfunction. SlowDragon has excellent links to advice for improving gut function. Going gluten free can be a great help but don't do this if your GP is going to check for coeliac so check at your appointment. You need to keep eating gluten to do a gluten challenge.

pinkjazz profile image
pinkjazzโ€ข in reply toNanaedake

Ok thanks I have Hashimotos and was meant to be gluten free but I haven't been eating that well for about 4 years and I was living on toast (I don't know why)

My nutrient levels dropped when I was eating like this and I have considered coeliac which my GP didn't want to test me for.

Now that my new GP is considering testing me for it I want to do the gluten challenge properly

Thyroid peroxidase antibodies *>2000 (<34)

Thyroglobulin antibodies *275.3 (<115)

Nanaedake profile image
Nanaedakeโ€ข in reply topinkjazz

Well, one thing with thyroid disease is you need to nourish your body properly and toast is about as nutritious as a piece of cardboard or an old sock. You need to be a bit kinder to yourself.

pinkjazz profile image
pinkjazzโ€ข in reply toNanaedake

Yes I couldn't afford to eat much else. I had no job at the time

Nanaedake profile image
Nanaedakeโ€ข in reply topinkjazz

Was that because of being so unwell that you had no job? I hope things are better now?

pinkjazz profile image
pinkjazzโ€ข in reply toNanaedake

Yes I was too unwell to work and I was off sick for 2 years. I am now back in work and my manager understands I have days where I don't perform as well as I do other days. It is only meant to be a temporary job lasting 3 months and I've been there 6 months now

Nanaedake profile image
Nanaedakeโ€ข in reply topinkjazz

That's great you've been there 6 months. It must be helping to restore your confidence, now if you can get your health back on track you'll be able to really enjoy your job and life again. With the help of your new GP and this forum lets hope things turn around for you.

SlowDragon profile image
SlowDragonAdministrator

Why are you only on 50mcgs when been on higher dose in past? Have you had T3 started and then stopped?

Low vitamin levels stop Thyroid hormone working

So essential to improve these alongside increase in Levo. If you can tolerate 50mcgs increase then stick on that for 6-8 weeks and then get rested.

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. This gives highest TSH, lowest FT4 and most consistent results

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

I don't personally think it worth the hassle of gluten challenge. Most likely negative for coeliac as it far more likely intolerance

Don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

drknews.com/changing-your-d...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Importance of magnesium

hypothyroidmom.com/two-vita...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated โ€“ 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal โ€“ that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

With Hashimoto's we must heal the gut, improve vitamins to very good levels, and take high enough dose of Levo

If after all that FT3 remains on low side, likely to need addition of small dose of T3

Read as much as possible about Hashimoto's

Margas profile image
Margasโ€ข in reply toSlowDragon

SlowDragon,

I have been learning tons from you. Many thanks for being here. As a recent diagnosed lupic, I have changed my diet to GF Aand DF.My symptoms together with 400 mg Plaquinil and 5mg Prednisolone have diminished a lot. I also take probiotics every day. Do only eat wild fish, home grown vegetablez and fruit. Grass feed beef twice a week. No sugar since August.Flaxseed, olive and coconut oil. Green tea as well as cats claw, ginger and turmeric. No nightshades. Tomorriw i am seeing my rheumy and last blood/urin work results. But i have many doubts about my thyroid levels as well. Together with vitamin and minerais. I underwent surgery on the thyroid. Goiter was removed 19 years ago. I only have hakf of the thyroid. I have never been the same person as before. This was two years after my second son was born. Now i believe lupus atrived because of gut and/or thyroid problems. Would you be so nice to comment on my thyroid values? I can begin a post where I paste them?

Sorry, pinkJazz for using your discussion to ask Slowdragon to do me this favour... ๐ŸŒ But all the comments you got here from the diiferent members are very informative and helpful to me.

Thank you all.

Margarida

SlowDragon profile image
SlowDragonAdministratorโ€ข in reply toMargas

Yes of course.

If you put your results and ranges on a new post for yourself, members can advise.

Starfish123 profile image
Starfish123

Hi,

Plantar fasciitis is a known symptom of vitamin d3 deficiency, I found this out from reading white papers when I had my own deficiency. My plantar fasciitis went away when I was treated for the vit d3 deficiency, it only returns if I forget to supplement for a few weeks.

Unfortunately Drs donโ€™t seem aware of the fact but research does say plantar fasciitis is a symptom of vit d3 deficiency.

I hope it helps

Margas profile image
Margasโ€ข in reply toStarfish123

I have been havin heel pain for thenlst three months. Could this be plantar fasciitis? Orbjust one more symptom related to lupus/fybromialgia?

SlowDragon profile image
SlowDragonAdministratorโ€ข in reply toMargas

Could be, you had low vitamin D. So correcting that is first step (no pun intended!)

SlowDragon profile image
SlowDragonAdministratorโ€ข in reply toStarfish123

My severe plantar fasciitis didn't go until T3 was also added. Many others on here found same. I have DIO2 gene variation, Hashimoto's and gluten intolerant, so very poor converter

I was very deficient in vitamin D and magnesium, but just correcting these didn't help

Herbal24 profile image
Herbal24

Are you taking synthroid, I was the way you are describing, the Dr. prescriped synthroid and Iโ€™am doing great, ask your Dr. about it, I pay my own medications, donโ€™t know if your insurance covers . I pay $120 for 3 months refill which is $40 a month

pinkjazz profile image
pinkjazzโ€ข in reply toHerbal24

Hi no taking levothyroxine thanks. Is synthroid different?

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