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Thyroid UK
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Feeling run down

Hi I am a new member, I am 27 years old and I don't think my hypothyroidism has been controlled that well since 2015 when I was taking 75mcg levothyroxine and 12.5mcg T3. Endo at the time said my levels were holding steady on this dose and she added T3 to my levothyroxine because despite being on higher doses of levothyroxine my Free T3 level was always at the bottom of the range. After many dose changes 2 years on and onto my third endo my thyroid levels are now looking awful again. I was taking 75mcg levothyroxine on below results.

TSH 8.3 mIU/L (0.2 - 4.2)

FREE T4 13.8 pmol/L (12.0 - 22.0)

FREE T3 3.0 pmol/L (3.1 - 6.8)

Symptoms are

Low concentration, making more mistakes at work and missing important information

Tiredness, sleeping throughout the afternoon and early evening

Heavy periods bleeding through my clothes

Feeling cold even with the air conditioner on

Preference for heat

Constipation alternating with diarrhoea

Loss of appetite but stomach feeling empty

Muscle weakness and aches

Losing hair from head, coming out onto brush in clumps

Dizziness, especially around the time of my period - low iron?

Swollen throat, thyroid area feeling irritated and tight. Ultrasound last year confirmed a goitre and hypoechoic thyroid gland

Thanks in advance

29 Replies
oldestnewest

Well your TSH is much too high. The aim is to get the TSH level down to 1.0 or slightly lower and eliminate symptoms. You need to increase your dose of levothyroxine and you need a blood test every 6 weeks and increase the dose until you reach TSH of 1.0 or thereabouts.

Have you got thyroid antibodies and have you had vitamin levels tested?

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Hi yes I have antibodies

THYROID PEROXIDASE ANTIBODIES 458.3 IU/mL (<34)

THYROGLOBULIN ANTIBODIES >1200 IU/mL (<115)

No idea what to do about vitamins, I am confused about what to supplement but will post them if advice can be given.

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Yes, post vitamin levels. There are good people who can give you advice here.

As you have thyroid antibodies, that means you have Hashimotos thyroiditis. Your blood test results may fluctuate as a result. You can read more about Hashimotos thyroiditis on the Thyroid UK website. They have good information.

You need to learn about it because Endocrinologists and doctors don't seem to know much and you need to learn how to manage your condition rather than leave it in their hands. Has your Endo or Doctor told you that you have Hashimotos?

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Hi I thought I have Hashimotos because I once spoke to a GP at my practice because my antibodies were going up and down and I asked her what can be done about the Hashimotos. She told me I did not have Hashimotos and handed me a leaflet on mental health (I threw this in the bin on my way home) I don't know why she reacted like that but I don't ever see her anymore since she retired.

Will post vitamin and mineral results now.

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That's a dreadful response from your doctor. Doctors don't usually call it Hashimotos, they call it thyroid autoimmune disease if they know anything about it at all which most don't. In any case, they should be aware of Hashimotos. It was first described by a Japanese doctor after whom it is named. It's recognised all over the world by that name.

I'm sorry you were handed a flyer on mental health but I'm afraid that's the way most thyroid patients have been treated by the medical profession. Rather than looking into our symptoms they've tried to fob many off with anti-d's and the like. Good for you, throwing it in the bin.

When you have Hashimotos, the antibodies attack the thyroid cells and as the cells die they release a lot of hormone which can make your TSH level take a dip and make it look as though you are overmedicated. Sometimes you might have to slightly reduce your thyroid meds by 25mcg for a little while and retest then resume the previous dose or possibly slightly increase the dose as you may become a little more hypothyroid as the antibodies slowly reduce your thyroid gland.

You could take 200mcg of selenium daily which may reduce the antibodies and will help with the conversion of T4 to T3. Getting your TSH down to 1.0 may also help to prevent antibody activity.

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She told me I did not have Hashimotos and handed me a leaflet on mental health

Cheeky mare!

If your antibodies have ever been over range then you have Hashi's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Some info on Hashi's, read an learn because your ignorant doctors know nothing about it so you'll have to help yourself.

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_...

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I hear you about the cheeky mare bit. :D Thanks

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Karaj_90 was there any reason your T3 medication was taken away? If you felt well on it you should not have had it withdrawn.

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I felt well on it but my current endo says T3 is not ideal for hypothyroidism treatment and symptoms do not equal efficacy.

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Well, the levothyroxine the NHS has been dishing out has not been ideal for hypothyroidism treatment either. Far from it and you probably needed the T3 to make up for poor quality levothyroxine and less than optimal treatment.

What they are not telling patients is that the NHS allowed us to have poor quality levothyroxine since the Commission for Human Medicine and the MHRA who are the regulators for Human Medicines had previously permitted levothyroxine to be produced and distributed that was neither bioequivalent in its generic form nor satisfactorily bioavailable. In fact, they had the medicine wrongly classified as a stable drug when it is an unstable drug. This meant that the manufacturers did not have to comply with stringent regulations applied to unstable drug production.

As a result of the lack of quality, many people became unwell, especially when they were switched between formulations. You can read the report here.

gov.uk/government/publicati...

Poor quality levothyroxine was finally completely replaced in 2015 which is when it sounds like you were switched and your T3 taken away but you weren't told the real reason. In addition, Concordia who supply T3 hiked the price so that the NHS no longer wants to supply it so it's become a cost issue as well as a quality issue.

There is no guarantee that the govenment has got the production regulations around levothyroxine right yet. People recently switched to the new formulation of TEVA have complained of symptoms on this forum so the quality of levothyroxines may still not be sufficient.

Therefore, you need to have your FT3 levels checked because if they are still low you need to insist that the T3 medication is restored.

On the other hand if your FT3 levels are good and at the top of the range then your symptoms may be vitamin deficiencies. Taking your T3 away and not increasing your levvothyroxine has likely left you hypothyroid and caused vitamin deficiencies. So your Endo instead of making you better has made you ill. Ask your Endo why he thinks it's ok to make you ill and leave you suffering with horrible symptoms?

The Endo is following the advice of the BTA who state that there is no evidence for the efficacy of combination treatment of LT4 and T3. However, there is no evidence it causes any harm either. In fact, low or insufficient T3 is likely to have profound effects on the body.

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Hi yes my levels were better on the T3 and symptoms were improved on it. I have been taking Teva levothyroxine and my stomach has been cramping a bit on this. GP passed it off as irritable bowel syndrome.

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Irritable bowel could be caused by low thyroid levels so you need an increase in Levothyroxine dose whatever levo you take. If there was a levothyroxine that suited you I would stick to it while you sort out your dose and increase it until your TSH reaches about 1.0. Make sure you test your FT3 level too since you were low before and get your T3 restored if your levels continue to be low. Also test your vitamin levels and optimise those as they're bound to be low now. Once you have your vitamin test results, post on this forum for best advice.

Then once you're feeling well, if you want to try TEVA again you'll know whether it makes you ill or not. Lots of people on this forum have had problems with TEVA. Do a search and you can read what they've said. TEVA has been reformulated for release in 2015 so it's not the same formulation as it used to be.

If you discover that TEVA makes you ill then use the yellow card reporting system to report the adverse effects.

It is on the MHRA website. If we don't report we won't get better quality.

yellowcard.mhra.gov.uk/yell...

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Thanks for this, the endo I have been seeing said I was likely lactose intolerant because of how low my thyroid levels were on higher doses so recommended I take the Teva lactose free ones. I haven't had any problems with Actavis or Wockhardt or Mercury. The endo was surprised I had initial problems on Teva but when I told him I ate or drank something to help relieve the irritable bowel feeling (which works very briefly and I endure the discomfort for a whole hour from the dose until I eat or drink anything due to me taking the tablets) he seemed happy with that. Stomach is just noisy most of the time and feels unsettled. I had to take a day off work when this first happened because the problem was so bad.

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If he thinks you're lactose intollerant then he should test properly for that because it isn't a good thing to take dairy products out of your diet without evidence and good reason. I think he is making assumptions rather than checking things out.

If you were lactose intollerant you would notice it whenever you ate dairy products. Levothyroxine has tiny, tiny amounts of lactose in it and I've read people on this forum who are proven lactose intolerant say they don't notice it in the levothryoxine so I think he's talking nonsense personally.

Sounds like he doesn't have a clue how to improve your health and is clutching at straws since TEVA is the latest levothyroxine to be released and is cheap compared to adding T3 back in, I think he's giving you the cheap option, making out it's something special.

Am I just being cynical??

The old TEVA formulation upset my stomach.

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Hi some dairy does disagree with me.

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Irritable bowel defo consistent with hypo. Poor you! Seaside Susie is also dead right about the grain free thing. Gliadin attacks the bowel causing leaky gut that triggers autoimmunity. Sounds like you’re missing your T3 too. I couldn’t survive without mine, but couldn’t even get a diagnosis from the doc. Self-education the only route. X

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So glad it isn't a stress related thing like one GP said! Will start a gluten free diet from now on. :)

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Good call. Gluten only part of the issue though. Grains (wheat rye corn barley millet) also contain many other problematic components. Phytates block essential mineral absorption, amylopectin A causes an inflammatory response due to massively elevated blood sugar and gliadin derived opiates keep us hooked. Take a look at wheatbellyblog.com , Wheat Belly on Facebook and Wheat Belly Total Health by Dr William Davis. These resources changed my life. PM me for any help/info/support x

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Loads of people have had terrible reaction to Teva.

Take it back to Pharmacist and ask for your normal brand

Also put in yellow card

yellowcard.mhra.gov.uk

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All the symptoms you have, I had. T3 got rid of most of it for me. I am allergic to iodine and T4 is Iodine. So My cholesterol was 550, I had really high blood pressure, too. Couldn't sleep. I found a Doctor who prescribed full T3. So I take 8, 25mcg tabs everyday. My BP went back to normal and so did my cholesterol. The 40 lbs. I gained on T4 went away. I don't have to pick up all the hair in shopping bags off the shower floor anymore. I am happy now and not in the depression of t4. My bones are getting stronger now, too. A lot of hypothyroid people would be better off if their endo would prescribe T3 with it. Levothyroxine almost killed me.

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Karaj_90 Someone took your T3 away? Why?

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We have seen close to a hundred people on here recently

Same story....doing well on levo and addition of small amount of T3....only for different endo to come along and stop the T3

Though 75mcg plus 12.5mcg was a low dose. Do you have results from then?

Plus were vitamins tested then?

Extremely common to have low vitamin levels with Hashimoto's and essential to get them tip-top before adding T3

As you have Hashimoto's you really need to consider trying strictly gluten free diet

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. When they are too low they stop Thyroid hormones working.

Changing to a strictly gluten free diet may help reduce symptoms.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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I felt well on it but my current endo says T3 is not ideal for hypothyroidism treatment and symptoms do not equal efficacy. I can certainly post vitamin and mineral results back when T3 was taken and when it was taken away.

Results from 75mcg levothyroxine and 12.5mcg T3

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

TSH <0.02 (0.2 - 4.2)

Free T4 20.3 (12 - 22)

Free T3 5.2 (3.1 - 6.8)

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These were perfect

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Your results were fine with LT4,T3 combination therapy.

Free T4 20.6 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

Both FT4 and FT3 are in range and high in range which is where you want them to be.

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Karaj_90 Please do post your vitamin results before and after your T3 was taken away. It would be very interesting to see what's happened. We've had other people post before and after and let's find out whether it affects vitamin levels or not?

If your vitamin levels dropped after T3 was removed then more proof that your Endo's approach has made you ill.

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Hi vitamins and minerals are on another post somewhere I think but they have all dropped after T3 was taken away.

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You have clear clinical need for T3

Financial reasons are behind stopping T3

dailymail.co.uk/health/arti...

You may want to do DIO2 gene test

m.imgur.com/a/U42vD

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DIO2 test details

thyroiduk.org.uk/tuk/testin...

It's a common gene variation

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