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Thyroid UK
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TSH going up and down

My TSH has been going up and down since diagnosis in 2011. My brand of Levo has remained the same since Nov 2017 and the TSH continue to do this up and down thing. It was changed to Teva in September 2017. Please help.

My symptoms are worsening as time goes on. I take 150mcg Levo

I have crawling sensations all over skin. Flaky skin. Muzzy brain. Insomnia. Constipation. Pins and needles. Hair loss. Heat intolerance. Aches and pains. Breathlessness. Dry eye. Possible Lupus/Sjogren's. Weight gain. Periods irregular and heavy.

I was on the following before Teva

Actavis

Mercury

Wockhardt

Thybonn

Liothyronine (T3)

I am 33 years old and female.

Thank you in advance.

APRIL 2018

TSH 4.27 (0.27 - 4.20)

FREE T4 17.3 (12.0 - 22.0)

FREE T3 3.7 (3.1 - 6.8)

39 Replies
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I think it's the Teva. A lot of members say it's less effective. I can't tolerate it. It gives me IBS symptoms. I don't have IBS! What were you on before Teva? Did you feel well on it? Tell your GP you would like to go back to the brand you were using before. If he won't name it on prescription ring round the pharmacies to see which one stocks it. There seems to be a lottery at the moment on what brand you receive and people are suffering as a result. Hope you get sorted.

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Thank you yes it gives me IBS symptoms too I do not feel well on it at all and other brands did not improve my levels

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I was on the following before Teva

Actavis

Mercury

Wockhardt

Thybonn

Liothyronine (T3)

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Why was T3 stopped?

Likely to need some added to T4 eventually but vitamin levels must be optimal first and most of us need absolutely strictly gluten free diet too before T3

Look at DIO2 gene test as well

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

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Thank you it was stopped due to thyrotoxic levels and also because the endo did not like me taking it

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Do you always have your tests done early morning and fasting? Do you have a copy of your latest blood test results? If so, post them here, and let's have a look. :)

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Thank you all bloods done early morning fasting

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Latest ones done in April 2018 have been posted, they were done early morning and fasting and I really thought I was worse than what the bloods were showing because I was out of breath going up to the hospital despite being very mobile

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Well, that low ferritin would make you out of breath. :)

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My TSH was 4.65 the time before that in December 2017.

<0.02 in November 2017.

5.36 in October 2017.

0.03 in August 2017.

1.66 January 2017.

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Are you being treated by GP or endo?

Teva brand upsets many. If they think you are lactose intolerant ask for liquid T4 (its expensive so they are reluctant)

Hashimoto's affects the gut and often leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

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

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)

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

Ideally ask GP for coeliac blood test first

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

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

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

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Thank you I am being treated by both but I want to change endos. I go to Bristol Royal Infirmary

I have Hashimotos due to elevated thyroid antibodies to TPO and TG but the endo has not mentioned what they mean

GP currently monitoring me and I haven't spoken to my endo since January 2018

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There is no medical treatment for Hashimoto's. But 1000's on here find strictly gluten free diet helps

Some need dairy free too

Did endo say you had to have Teva? It's obviously not working looking at your dire vitamins

healthunlocked.com/search/t...

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Thank you the endo said I have to have Teva because he looked through all my previous results with me on Actavis, Wockhardt and Mercury and asked me if I have lactose intolerance.

I said I suspect I have it because of symptoms I get when consuming dairy and that was when the decision to prescribe Teva came about, I tried another European make called Thybonn but this did not agree with me

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I have made the GP fully aware of my problems regarding this and because of all of this going on I didn't know when it was a best time to ask for a new referral to a different endo who will treat me better since this one makes me feel uncomfortable so I am going to wait until new bloods come through next week before asking for a new referral

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So is your diet absolutely strictly dairy free?

Thyroid Uk has list of recommended thyroid specialists


 please email Dionne at

tukadmin@thyroiduk.org

Your vitamin levels will need improving massively before any thyroid hormones can work

Ask GP for coeliac blood test and testing for Pernicious Anaemia before GP starting vitamin B12 injections

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Yes strictly dairy free and I plan to ask for coeliac to be tested thank you

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I'm not coeliac but gave up gluten based on recommendations from this site and started to feel better surprisingly quickly. I tested whether it was the gluten by having a couple of days of eating bread etc. and felt really exhausted again for a week or so, so I'm confident going gluten free is best for me. Definitely worth trying if you're feeling poorly. I was also allergic to Teva but luckily my pharmacist is able to supply other brands.

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Just wondering, if dairy free means no eggs? I would like to try dairy free and gluten free

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No eggs aren’t dairy - it’s the lactose or casein in dairy that the problem

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Thanks. I was confused because on the AIP (autoimmune protocol diet) you have to delete eggs and add back later to see)

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Yes AIP cuts out lots of foods, before reintroducing one at a time.

Apparently eggs can be reactive for some people

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I have always stick to 1 brand wockhardt. And I would never take TEVA Hurd some memeny bad things about it.

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I have similar issues but I'm not threatened as when I become hyper or hypo the tsh always stabilizes. In 6 years I had a three flares up. My anti tpo is quite high. Like 8000. I started using sellenium supplements and gluten I diet. It helps. I'm not 100% but het, who is.

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Thank you for this post because I've just had my first repeat of thyroxine and rushed to check which brand! Like the other one, it is Mercury, which so far seems to suit me.

Early days yet, so I can't give any more advice than has been given, sorry. Except to check your vitamin and mineral results to make sure they are high enough.

Hope you get things sorted soon x

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Thank you I have been advised they are all too low

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Just checked your list of results. From what I've read so far on this site they are probably too HIGH, or about right. 5.36, and even the first result of 4.65 is more likely too high! 0.02 or 3 may be a bit low, but I'm sure they said on here that this often happens when we get the levels properly adjusted and is nothing to worry about. Maybe the low results show that the meds are keeping the TSH under control (or rather the T3 at a good level?) quite well most of the time xx

"<0.02 in November 2017.

5.36 in October 2017.

0.03 in August 2017.

1.66 January 2017."

I'm no expert though, having only discovered this group recently.

Could someone else comment please?

...Oh, just looked at later posts (while I was composing mine maybe!) They have commented.

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Sorry I meant vitamins are all too low

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Sorry, my mistake x

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First you have to check your vitamin levels and make it optimal

- vitamin D

- vitamin B12

- ferritin

Also you have to check antibodies TPO and TgAB, cortisol (your adrenals), women hormons

Your free T4 and free T3 are low... It will be better to be on combi therapy T4+T3 or NDT. Your dose of Levo is high but you still have low T4...:-( I think you have problem with absorbing of T4 and transfering it into T3. The reasons can be

- low vitamin levels

- leaky gut

- problems with adrenals

- you eat or use products, tablets or supplements, food or drinks which contain fluorine, chlorine, lead, gluten

I am on combi therapy (T4+T3). The last three months I was feeling not good like these hormons were not absorbing by my body...I was trying to find information about that. I understood that these months I was using different toothpaste and mouthwash that was containg fluorine...:-( Now I changed it and I start to feel better. Please never swim in the pool as it is full of chlorine.

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Thank you I have been advised my vitamins are all too low

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Just to get it out there, many are fine with TEVA so it's probably a fillers thing that upsets some and many wont start on it because of bad press but it's silly to be saying that when not speaking for experience.

Looking at your April results two things stand out-low FT4 and low FT3 and a high TSH screams not on enough medication. Most feel good when TSH is around 1 and the other readings higher in their ranges. So that may explain all the brands you have tried that haven't really worked for you-just not taking enough probably because your doctor doesn't really understand things and is afraid to up your dose.

Having said that the FT3 is lower in its range than the FT4 reading so that suggests you may not be converting well. So you need to look at the Thyroid and what it needs to work better. So you need to rest Vit D, B12, folate and ferritin. Being in range isn't good enough and very much like your thyroid results it's where in the range that matters. Lots of us have to use supplements to get us working much better. As well as general wellness they aid conversion and can get rid or reduce some symptoms you may have. Multivits are generally frowned upon as the levels are very low so it's better to treat the result of each test individually plus some multi Vits contain iron which sounds good but iron can't be taken at the same time as the others. So lots of things to look at and act upon.

If you have a look at the Thyroid UK site who manage this forum you will find other things to help you as well. Shout out if anything you don't understand.

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Thank you I have been told my vitamins are too low

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If those were my results, i would be very hypo...... i would drop Levo completely and take only T3.... I learned alot from my endo dr who likes my T3 in my upper range.... All those symptoms u are having are from being very hypo..... My dr likes my TSH under 1....

Remember Tsh will drop to even a negative while on T3... I personally don't take ANY T3 for more then 15 hours BEFORE LABS.... Please check ur Antibodies, and remember to have a good gut... low acid in stomach is very common... Check ur Vitamin D, B12,Iodine, Selenium, Zinc , IRON FULL PANEL ( FERRITIN ALSO).... I take a NDT medicine Armour thyroid it has T4, T3, T2,T1, AND Calcitonin....

I also follow the stop the thyroid madness...

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THYROID ANTIBODIES 705 (<34)

What do they mean please?

Vitamins low too

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You have Hashimoto's please increase vitamin D and watch ur diet try to cut/limit all sugars and try to go gluten and eat a clean as possible... No chips, candy, processed foods... If that was mine i would work on lowering inflammation in my body.. i take tumeric and fish oil, increase vitamin C.. Please the link i attached and see if you can get more labs done.... They have a facebook also....

google.com/url?sa=i&rct=j&q...

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Must add if you need to take any calcium/iron pills please have a gap of 4-5 hrs after taking ur thyroid medicine. I take my thyroid medicine at 530am and have my breakfast at 930am.... however i do drnk lemon water hot after 2 hrs at about 730am

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Thank you I take my Levo at 8:45am and leave a gap of about 8 hours for supplements

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You have to check your anti-tpo levels to know

If it is for sure primary hypothyroidism or

Potentially central hypothyroidism

If your anti-tpo levels are high then it is primary

If they are under 5 then you could

Have central hypothyroidism

Which is a pituitary problem not

A thyroid problem

This is advanced endocrinology so it would

Help to do some research too

Good luck

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