Hi I am new, diagnosed with hypothyroidism 2013 taking 150mcg levothyroxine, since there is doubt surrounding what is happening with T3 I have retaken it today. Knowing my supply will soon run out could anyone suggest a supplier please? Thankyou
TSH 6.3 (0.2 - 4.2)
Free T4 13.9 (12 - 22)
Free T3 3.6 (3.1 - 6.8)
TPO antibody 885 (<34)
TG antibody 376.3 (<115)
Laura2225,
How much T3 are you taking with 150mcg Levothyroxine?
You are very undermedicated to have TSH 6.3 and both FT4 and FT3 are low in range.
Thyroid peroxidase and thyroglobulin 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.
chriskresser.com/the-gluten...
thyroiduk.org.uk/tuk/about_...
Thankyou I am taking 10mcg T3
Laura2225,
Is that in addition to 150mcg Levothyroxine?
What do you mean by "I have retaken it today"? Don't you take it everyday?
Yes but I don't know if I need to reduce levothyroxine. I haven't taken it in 3 months and it was stopped by my current endo
Laura2225,
Let's start again?
When you had the blood test above done what dose Levothyroxine were you taking and what dose T3 (if any) were you taking?
Why did your endo stop prescribing T3?
I was taking 150mcg levothyroxine and no T3.
Endo stopped prescribing T3 because he did not approve of it despite it helping me.
Laura2225,
Well, you are very undermedicated on 150mcg so it's no surprise you aren't feeling well. Didn't endo increase Levothyroxine dose when T3 was withdrawn?
T3 without prescription will be 25mcg tablets. Buy a pillcutter and quarter the tablets into 6.25mcg doses. Take 6.25mcg with 150mcg Levothyroxine and a second 6.25mcg dose at bedtime.
Thankyou no endo kept levothyroxine at the same dose.
Laura
I take it your T3 is prescribed by an endo???
What do you mean by "I have retaken it today"?
If you have a proven clinical need for T3 then you should be able to continue having it prescribed.
As Clutter has said, you are very undermedicated. You also have Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. Are you addressing the Hashi's with a strict gluten free diet and supplementing with selenium L-selenomethionine 200mcg daily?
Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrient levels are the result. Nutrient deficiencies could very well be part of your problem. Nutrient levels need to be optimal for thyroid hormone to be able to work.
Have you had the following tested
Vit D
B12
Folate
Ferritin
Iron Panel
Full blood count
If so, post results and reference ranges for comment, also say if you are supplementing and what dose, and for how long. This could be at the root of your problem, as has been seen many times on the forum recently.
Thankyou it was prescribed by an endo but she is now based in London and my GP says it is too far for me to see her so I am under no monitoring for taking T3. I have retaken it because the endo I see does not like me taking it and I am fed up of feeling ill.
I am not gluten free or taking selenium.
Will post vitamin and mineral results now.
Selenium is vital. And do is gluten free for most of us with Hashimotos. Do you take any vitamin supplements? If so what and how much? And where do you live?
I live in Bristol. I didn't know I had to go gluten free or take selenium.
I take Better You vitamin D 3000iu once a day and 5mg folic acid once a day and hydroxocobalamin injections that I have every 3 months. No longer taking iron but I was up until 2016.
Laura
Whose decision is it that it too far for you to see her? Will the surgery allow you to see an endo in London if you want to travel? If you are willing to go to London and the surgery allows you to see an endo there, then the decision is yours surely.
I think it's very unfair that one endo prescribes T3, then another one comes along and removes it, regardless of the fact that you are doing well on it and your symptoms and results back that up.
You need to address the Hashi's because that is going to cause problems that your doctor will probably not understand (most don't attach any importance to antibodies and have no idea how Hashi's affects the patients, their symptoms and test results).
Hashimoto's is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results, you can have symptoms of both hypo and hyper and sometimes dose adjustments may be necessary if you experience a 'Hashi's Flare' where the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These 'Flares' are temporary and things then go back to normal, and readjustment of dose may be necessary.
You can help reduce the antibodies, and hopefully less the antibody attacks, 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_...
**
As I said, gut/absorption problems go hand in hand with Hashi's and tend to trash nutrients. So let's see your results for vitamins and minerals along with supplement/dose/how long you've been taking them. All nutrients need to be optimal for thyroid hormone to work, if you have absorption problems then nothing is going to work - malabsorption = low nutrients = thyroid hormone can't work.
Thankyou it was the GP receptionist and GP's decision it being too far for me to go, they won't let me travel either
So are they saying they wont fund you seeing an endo out of the area? If that's not the case then surely it's your decision if you're willing to travel.
To find a good endo in your area, email dionne.fulcher@thyroiduk.org for the list of thyroid friendly endos then ask on the forum for feedback about any you can get to and if they are T3 friendly. Replies will have to be by private message.
No they just said it would be pointless in me going all the way there for an appointment that is only a few minutes long
Well, that has to be your decision. And if it meant you got your T3 back from an endo that has at least a bit of a clue, then that has to be positive.
I am probably being paranoid but I feel like they are stopping me from being well again
No I don't think so, I honestly think it's more of a case that they really, truly, haven't got a clue. It's said that the time spent on thyroid conditions at med school is half a day, they certainly can't learn much in that amount of time. And of course, it's not very interesting as far as endocrinology goes. Diabetes is much more interesting which is why most endos are diabetes specialists, there are very few thyroid specialists.
And GPs are generalists, they may have a special interest in certain things, there's one at my surgery has a special interest in lungs, one used to have a special interest in eyes (he's retired now), and we have a new one who specialises in saying things like "What do you expect me to do, I'm not a gynaecologist (or whatever)".
There are dozens, probably hundreds over time, of members who come on here with exactly the same story as you.
They've had results that show poor conversion, had T3 added to Levo, had T3 taken away, had Levo doses increased, decreased, stopped altogether, they've been accused of non-compliance regarding their thyroid meds, they've been accused of abusing their thyroid meds, they've been accused of lying. All because the doctors don't know how to treat Hashi's, they just don't understand the nature of how symptoms and results fluctuate, they really haven't got a clue so to cover their ignorance and protect their delicate egos they blame the patient.
Doctors don't seem to know anything about vitamins and minerals, as long as they're in range then everything is fine. But with results like yours, the Hashi's has caused absorption problems, nutrients can't be absorbed, supplements to help nutrient levels wont work because of the absorption problem, thyroid hormone can't work because nutrients aren't optional. You haven't a hope in hell of getting better at the moment but doctors just don't know this.
We've all had to educate ourselves so that we can help ourselves. Read through all the links and information so you can start helping yourself.
Well put!
Ferritin 34 (30 - 400)
Folate 2.1 (2.5 - 19.5)
Vitamin B12 301 (190 - 900)
Total vitamin D 45.8 (25 - 50 deficiency supplementation is indicated)
I haven't found an iron supplement that is gentle on my stomach. I didn't know whether to start folic acid after taking B12 shots so I haven't been taking folic acid since the injections and I take 1000iu oral spray vitamin D.
Laura
Ferritin 34 (30 - 400)
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 can 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... [I raised my ferritin from 35 to currently 119 purely by eating liver once a week as I couldn't tolerate iron tablets.]
If you're having problems with the prescribed iron, what else have you tried? Some members find Solgar Gentle Iron or any other brand containing Albion Iron Bisglycinate to be gentle on the stomach. There is a supplement called Blood Builder by MegaFood that is food based which might be worth a try. Some people do OK on liquid iron but the elemental iron contained in that is quite low.
Did you take each iron tablet with 1000mg Vit C to aid absorption?
Have you had a full blood count and iron panel to see if you have iron deficiency anaemia?
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Total vitamin D 45.8 (25 - 50 deficiency supplementation is indicated) 1000iu oral spray vitamin D.
1000iu or 3000iu as mentioned above? Whichever it is, it's not enough.
The level recommended by the Vit D Council is 100-150nmol/L. As you're using the BetterYou spray, if it's the 3000iu dose one then you need to double dose and take 6000iu for 3 months then retest. When 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.
BetterYou do a combined D3/K2-MK7 spray which you might want to change to, then that just leaves magnesium as essential to help D3 to work.
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Folate 2.1 (2.5 - 19.5)
Vitamin B12 301 (190 - 900)
I didn't know whether to start folic acid after taking B12 shots so I haven't been taking folic acid since the injections
Your GP should have told you what to do. I believe you should take the folic acid after the B12 injections have commenced. However, the Pernicious Anaemia Society forum are the experts, so ask over there and they will give you guidance healthunlocked.com/pasoc
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You seem to have an absorption problem so this will need addressing. Check out SlowDragon 's reply to this thread which contains information and links which will help healthunlocked.com/thyroidu...
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Like so many other new members recently, you have doctors who don't understand how to treat hypothyroidism, have no knowledge of how important optimal nutrient levels are, and no nothing about Hashi's. All these need addressing, as well as seeing an endo who knows how to treat your results properly.
Thankyou I have only tried Spatone and ferrous fumarate and the vit C I only took once because it upset my stomach. I take 3000iu D3 now but 1000iu before the blood draw. I have iron deficiency anaemia
Laura
Try a different form of Vit C. Maybe you took the ascorbic acid form, some people do find it harsh. There are other forms.
You definitely need more D3 to get your level up in a reasonable amount of time.
What has your GP said about your iron deficiency anaemia? Are you under a haematologist? They really need to sort you out with some iron supplementation that doesn't upset your stomach. Iron Bisglycinate is supposed to be the most gentle but a lot more expensive, I don't know if it can be prescribed but they must have come across patients before who couldn't tolerate the usual supplements.
Thankyou will look for another vitamin C. Yes it was ascorbic acid. GP says ferritin is in range no action required and no longer under haematologist.
Ferritin 34 (30 - 400)
GP says ferritin is in range no action required
And that's a perfect example of what I was saying in my reply above, as long as the result is in range then everything is hunky dory!
You are just 4.1 points away from being under range. What would he have done then? Low ferritin and iron deficiency anaemia causes many problems and, as mentioned, thyroid hormone can't work until ferritin is at least 70.
Ask to be referred back to the haematologist. If GP asks why tell him it's because you still have iron deficiency anaemia, your ferritin is so close to the bottom of the range, and you need a different iron supplement prescribing.
It might be an idea to see a different GP in the practice.
SeasideSusie has given you fantastic amount of info.
It really is amazing that such a common disease as Hashimoto's and so very many medics have absolutely no idea that the gut is involved at all
It took me 20 years terrible treatment and only with great help from this forum and realising the ENORMOUS importance of vitamins
Many Medics seem completely unaware
Gluten intolerance is never mentioned or often dismissed as "fad" or "rubbish" by GP or endo. But that is only by someone who doesn't have Hashimoto's or tried it
There's masses of good scientific evidence and hundreds of Hashimoto's specialists (usually in USA) who realise gluten is big problem for many
With Hashimoto's, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins.
Low vitamin levels stop thyroid hormones working.
Following SeasideSusie excellent vitamin advice to get level to optimal levels, not just in range
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)
But 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...
Other things to help heal gut lining
Bone broth
thyroidpharmacist.com/artic...
Probiotics
carolinasthyroidinstitute.c...
Importance of magnesium
hypothyroidmom.com/two-vita...
Always take Levo on empty stomach and then nothing apart from water for at least an hour after.
Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
verywell.com/should-i-take-...
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
When you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
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