Hi I am new to the site. Sorry this might turn into a very long post.
I was diagnosed hypothyroid in 2011 but my TSH was not considered high enough to warrant medication and instead I was given laxatives and antidepressants for my symptoms. I was 25 at the time.
NOV 2011
*TSH 5.2 (0.2 – 4.2)
FREE T4 16.8 (12 – 22)
JAN 2012
TSH 2.3 (0.2 – 4.2)
It wasn’t until 2013 when the diagnosis came back as primary hypothyroidism and Levo 25mcg was started. My dose was then gradually raised all the way up to 125mcg in November 2013. Results were
JUNE 2013
*TSH 32 (0.2 – 4.2)
*FREE T4 10.3 (12 – 22)
AUG 2013 (75MCG LEVO INCREASE TO 100MCG AFTER AUG RESULTS)
TSH 4 (0.2 -4.2)
OCT 2013 (100MCG LEVO INCREASE TO 125MCG AFTER OCT RESULTS)
*TSH 4.4 (0.2 – 4.2)
FREE T4 15.4 (12 – 22)
FREE T3 5.5 (3.1 – 6.8)
DEC 2013 (125MCG LEVO NO INCREASE)
*TSH 4.6 (0.2 – 4.2)
FREE T4 15.6 (12 – 22)
*TPO ANTIBODY 47 (<34)
2014 my dose was changed about and my results fluctuated for most of this time. I also developed hyperthyroid symptoms in January 2014 and went to hospital with racing heart and palpitations in August 2014.
JAN 2014 (125MCG LEVO NO INCREASE)
TSH 2.7 (0.2 – 4.2)
FEB 2014 (125MCG LEVO NO INCREASE)
TSH 3.8 (0.2 – 4.2)
MAR 2014 (125MCG LEVO NO INCREASE)
TSH 1.89 (0.2 – 4.2)
FREE T4 13.8 (12 -22)
FREE T3 4.1 (3.1 – 6.8)
MAY 2014 (125MCG LEVO NO INCREASE)
*TSH 5.01 (0.2 – 4.2)
FREE T4 18.3 (12 – 22)
AUG 2014 (125MCG LEVO NO INCREASE REDUCED TO 50MCG LEVO AFTER AUG RESULTS)
*TSH 0.02 (0.2 – 4.2)
*FREE T4 24.3 (12 – 22)
*FREE T3 6.9 (3.1 – 6.8)
*TPO ANTIBODY 148 (<34)
SEP 2014 (50MCG LEVO INCREASED TO 100MCG AFTER SEP RESULTS)
TSH 2.59 (0.2 – 4.2)
FREE T4 15.7 (12 – 22)
FREE T3 4.2 (3.1 – 6.8)
NOV 2014 (100MCG LEVO INCREASED TO 125MCG AFTER NOV RESULTS)
*TSH 6.7 (0.2 – 4.2)
FREE T4 14.1 (12 -22)
FREE T3 4.0 (3.1 – 6.8)
In June 2015 my dose was raised to 175mcg and it was then that endo number 2 said T3 would be of some benefit to me. So I was given a trial of this and I didn’t feel better though my shift patterns at work affected my quality of life and I think this may have been why.
JAN 2015 (125MCG LEVO INCREASED TO 150MCG AFTER JAN RESULTS)
TSH 3.86 (0.2 – 4.2)
FREE T4 13.8 (12 – 22)
FREE T3 4.2 (3.1 – 6.8)
JUN 2015 (150MCG LEVO INCREASED TO 175MCG AFTER JUNE RESULTS) – PRIVATE BLOOD DRAW
*TSH 5.60 (0.2 – 4.2)
FREE T4 25.2 (12 – 22)
FREE T3 5.3 (3.1 – 6.8)
*TG ANTIBODY 266.3 (0 – 115 NEGATIVE)
*TPO ANTIBODY 68.5 (0 – 34)
AUG 2015 (175MCG LEVO ADJUSTED TO 75MCG LEVO AND 10MCG T3 AFTER AUG RESULTS)
TSH 1.22 (0.2 – 4.2)
FREE T4 19.3 (12 – 22)
FREE T3 3.8 (3.1 – 6.8)
OCT 2015 (75MCG LEVO AND 10MCG T3 NO INCREASE)
*TSH <0.02 (0.2 – 4.2)
FREE T4 20.8 (12 – 22)
FREE T3 5.6 (3.1 – 6.8)
DEC 2015 (75MCG LEVO AND 10MCG T3 INCREASED TO 100MCG LEVO AND 10MCG T3 AFER DEC RESULTS)
*TSH <0.02 (0.2 – 4.2)
FREE T4 20.4 (12 – 22)
FREE T3 5.2 (3.1 – 6.8)
2016 my doses were not as frequently changed but I was still tired, constipated, periods draining me, barely eating, feeling cold. I was still working all sorts of hours but I stopped this altogether in October 2016.
JAN 2016 (100MCG LEVO AND 10MCG T3 REDUCED TO 75MCG LEVO AND 10MCG T3)
*TSH 0.06 (0.2 – 4.2)
*FREE T4 22.8 (12 -22)
FREE T3 4.8 (3.1 – 6.8)
FEB 2016 (75MCG LEVO AND 10MCG T3 NO CHANGE AS ENDO THOUGHT MIGHT BE A VIRUS CAUSING THE ABNORMAL LEVELS)
*TSH 6.1 (0.2 – 4.2)
FREE T4 12.7 (12 – 22)
FREE T3 4.2 (3.1 – 6.8)
MAR 2016 (75MCG LEVO AND 10MCG T3 INCREASED TO 100MCG LEVO AND 10MCG T3 AFTER MAR RESULTS)
*TSH 6.8 (0.2 – 4.2)
FREE T4 13.1 (12 – 22)
FREE T3 4.3 (3.1 – 6.8)
MAY 2016 (100MCG LEVO AND 10MCG T3 INCREASED TO 125MCG LEVO AND 10MCG T3 AFTER MAY RESULTS)
TSH 3.88 (0.2 -4.2)
FREE T4 14.3 (12 – 22)
FREE T3 4.5 (3.1 – 6.8)
JUL 2016 (125MCG LEVO AND 10MCG T3 INCREASED TO 150MCG LEVO AND 10MCG T3 AFTER JUL RESULTS)
TSH 3.95 (0.2 – 4.2)
FREE T4 18.3 (12 – 22)
FREE T3 4.8 (3.1 – 6.8)
NOV 2016 (150MCG LEVO AND 10MCG T3 INCREASED TO 175MCG LEVO AND 10MCG T3 AFTER NOV RESULTS)
TSH 3.60 (0.2 – 4.2)
FREE T4 17.2 (12 – 22)
FREE T3 5.0 (3.1 – 6.8)
2017 my T3 was taken away by endo number 3 and since then I have been feeling more and downhill. I take 50mcg from 25mcg Levothyroxine Teva at the moment because my gut is unsettled on what I ought to be on which is 175mcg Levothyroxine Teva. I am lactose intolerant so cannot be on Actavis, Mercury or Wockhardt. My GP has said I need T3 because if the gut problems weren’t there when I was on the Levothyroxine and T3 it makes sense for me to be back on it again. Endo number 3 has denied reinstating the T3 so I am looking to get elsewhere.
JAN 2017 (175MCG LEVO AND 10MCG T3 INCREASED TO 200MCG LEVO AND 10MCG T3 AFTER JAN RESULTS)
TSH 1.69 (0.2 – 4.2)
FREE T4 16.1 (12 – 22)
FREE T3 4.5 (3.1 – 6.8)
JUN 2017 (200MCG LEVO AND 10MCG T3 REDUCED TO 150MCG LEVO AFTER JUN RESULTS)
*TSH <0.02 (0.2 – 4.2)
*FREE T4 28.8 (12 – 22)
*FREE T3 7.4 (3.1 – 6.8)
AUG 2017 (150MCG LEVO)
*TSH 0.03 (0.2 – 4.2)
FREE T4 21.1 (12 – 22)
FREE T3 4.7 (3.1 – 6.8)
OCT 2017 (150MCG LEVO INCREASED TO 175MCG LEVO AFTER OCT RESULTS)
*TSH 5.62 (0.2 – 4.2)
FREE T4 13.8 (12 – 22)
FREE T3 4.2 (3.1 – 6.8)
DEC 2017 (175MCG LEVO REDUCED TO 150MCG LEVO AFTER DEC RESULTS)
*TSH <0.02 (0.2 – 4.2
*FREE T4 25.2 (12 – 22)
FREE T3 4.3 (3.1 – 6.8)
FEB 2018 (150MCG LEVO INCREASED TO 175MCG LEVO AFTER FEB RESULTS)
*TSH 4.56 (0.2 – 4.2)
FREE T4 14.7 (12 – 22)
FREE T3 3.8 (3.1 – 6.8)
APR 2018 (175MCG LEVO)
TSH 4.23 (0.2 – 4.2)
FREE T4 17.2 (12 – 22)
FREE T3 3.6 (3.1 – 6.8)
Symptoms are –
Difficult swallowing
Brain fog
Constipation
Heavy periods
Dry skin
Acne
Male hair growth (confirmed polycystic ovarian syndrome)
Weight gain
Low appetite
Tiredness
Clumsiness
Dizziness
Ears ringing
Advice appreciated on my results or next plan of action. Thanks
FERRITIN 16 (15 - 150)
FOLATE 2.2 (2.5 - 19.5)
VITAMIN B12 224 (190 - 900)
VITAMIN D 33.4 (25 - 50 deficient)
RBC 4.28 (3.80 - 5.80)
WBC 4.31 (4.00 - 11.00)
MCV 78 (80 - 98)
MCH 28.1 (28 - 32)
HAEMOGLOBIN 121 (115 - 150)
IRON 8 (6 - 26)
TRANSFERRIN SATURATION 15 (12 - 45)
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Saffron2018
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Bit too much to read re results.....what were the various endocrinologists trying to get your results to? Only seen to have had FT3 over 5 late 2015, yet then they kept swopping doses - very odd. Looks like you need T3, but if endo won't cooperate and Gp powerless to prescribe due to CCG, then might look to getting it privately( like many on forum do- will pm you)
I wont comment on all your results but it's very plain to see what your endo appears to have missed and you haven't mentioned so I assume you don't know.
Your raised antibodies confirm autoimmune thyroiditis aka Hashimoto's which is where the antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
This is why your results have jumped about so much and why you have had times when you have experienced "hyper-type" symptoms.
I will take a guess and say that your endo is a diabetes specialist (most of them are) and knows very little about treating hypothyroidism and even less about autoimmune thyroiditis.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
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.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies, so you need to have tested the following
Vit D
B12
Folate
Ferritin
and if Ferritin is low you will need
Full blood count
Iron panel
We need optimal levels of vitamins and minerals for thyroid hormones to work properly.
You also need to get your TSH down to around 1 when on Levo only so we can see where your FT4 and FT3 lie and that will tell us if you have a conversion problem and whether adding T3 will help.
Many people have reported serious side effects from Teva thyroxine. It is the only lactose free tablet but there are oral solutions that your GP can prescribe if he is willing, or European lactose free capsules and tablets that he could prescribe - see the pdf linked to under Thyroid Hormone Replacements on ThyroidUK's main website here thyroiduk.org/tuk/treatment...
Your Hashi's should have been identified in December 2014 when your TPO antibodies were 47 (range <34).
You have to have a TSH of 1 or below and be on Levo only to know if you have a conversion problem. Which results did the 2nd endo base your conversion problem on? These results on 125mcg Levo in August 2014 show no sign of a conversion problem
TSH 0.02 (0.2 – 4.2)
*FREE T4 24.3 (12 – 22)
*FREE T3 6.9 (3.1 – 6.8)
Good conversion takes place when the FT4:FT3 ratio is between 3:1 and 4:1 and yours was 3.52 : 1
I see that dose changes have been made from, eg 125 down to 50mcg (after those results). Dose changes should only ever be by 25mcg increments.
Considering that you were on 125mcg in May 2014 and your TSH was 5.01, you can see how your Hashi's has messed with your results when on the same dose in August your TSH was 0.02
At the time your conversion didn't look good, but if your endo had looked at your other results he would have seen good conversion in August 2014 and he would also have noticed your Hashi's. Like I said, he is probably a diabetes specialist and hasn't a clue about thyroid disease, these types of endos are dangerous, they don't know what they're doing and they mess people about and keep them ill.
Hashi's doesn't cause good conversion. Hashi's destroys the thyroid and makes your results and symptoms fluctuate. Conversion of T4 to T3 is carried out in multiple tissues and organs of the body.
I have made GP aware I can't tolerate any more than 50mcg Teva and to be referred to a new endo for a different formulation of Levo, the GP says he wants new bloods done first.
So it's obvious that your Hashi's has caused gut/absorption problems which has caused your nutrient levels to be dire. You need to address the gut problems and you can see the information and links that SlowDragon has given in her reply near the bottom of this thread healthunlocked.com/thyroidu...
FERRITIN 16 (15 - 150)
FOLATE 2.2 (2.5 - 19.5)
VITAMIN B12 224 (190 - 900)
VITAMIN D 33.4 (25 - 50 deficient)
RBC 4.28 (3.80 - 5.80)
WBC 4.31 (4.00 - 11.00)
MCV 78 (80 - 98)
MCH 28.1 (28 - 32)
HAEMOGLOBIN 121 (115 - 150)
IRON 8 (6 - 26)
TRANSFERRIN SATURATION 15 (12 - 45)
I am assuming that your GP/endo has seen these. What has been said and what supplements are you taking?
You need to go back to your GP to discuss the following and sort out treatment
FERRITIN 16 (15 - 150)
MCV 78 (80 - 98)
These suggest iron deficiency anaemia and should not be ignored. Treatment is usually 3 x ferrous fumarate daily and each iron tablet should be taken with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
You can also 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...
FOLATE 2.2 (2.5 - 19.5)
VITAMIN B12 224 (190 - 900)
You need to check for B12 deficiency here b12deficiency.info/signs-an... and if you have any signs or symptoms then list them to discuss with your GP. You may need checking for B12 deficiency/Pernicious Anaemia, plenty of people with higher levels of B12 than yours have needed to start B12 injections.
Your folate is below range and you need folic acid prescribing but this must not be started before further testing of B12 has been carried out and B12 injections or other supplementation started.
VITAMIN D 33.4 - 800iu D3
Well, 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level. You are only 3.4 away from where you would be prescribed loading doses of D3 totalling 300,000 over a number of weeks. I would suggest you buy your own D3 and follow the treatment for Vit D deficiency with loading doses, and I would do the following
Weeks 1 & 2 - 9000iu daily (total 126,000)
Weeks 3 & 4 - 6000iu daily (total 84,000)
Weeks 5, 6, 7, 8 - 3000iu daily (total 84,000)
That gives a total of 294,000 which is close enough to the loading doses that would be prescribed.
Then retest to check your level.
When you have reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, 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 as recommended by the Vit D Council - 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
Hashimoto's affects the gut and 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.
Are you already absolutely on strictly dairy free diet? Or lactose free?
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
Vitamin D is too low. Dose needs increasing. Aiming to improve to around 100nmol.
Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you try 3000iu for 2-3 months and retest. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
I have hashimoto's and subclinical hypothyroidism and following a response to my own post on here I've gone strictly gluten free for 3 days now. It's obviously early days and I still feel terrible and have multiple symptoms but I can definitely feel some improvement, even after such a short amount of time. I really hope this trend continues.
I'd tested for coeliac via blood with my GP as we had thought about it before. It came back negative but you can get false negatives from that test I've read. I'm so eager to ask for an endoscopy to investigate further as I have so many symptoms which link to it. Not to mention the pale stool and low levels of digestive enzymes in stools etc
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)
NHS will very unlikely not do endoscopy unless coeliac blood test is positive
To have a endoscopy you need to eat high level gluten for 6 weeks prior. Test often not even clear.
Though it can help get to get gut issues medically acknowledged
Hashimoto's causes or is caused by leaky gut. Very unlikely coeliac, but gluten intolerant
Yeah this whole process has opened my eyes to how bad our NHS is at the moment, you hear things but until you're in the thick of it you can't comprehend.
Although they may not diagnose coeliac from an endoscopy they'd be able to see damage to the intestines?
I guess if my stool's improve within the next month I'll know more from that anyway.
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T3
Unexplained symptoms advice needed please
