Results going up and down advice please

[Bluetopaz1985]

Hi everyone I am new here. I am 33 years old, female, and having problems trying to work out why my results go up and down, as well as that I have been getting symptoms indicative of overactive thyroid but with underactive results? I was diagnosed hypothyroid in 2013 and I felt at my best on 200mcg Levo and 10mcg T3 which I took briefly but my endo who I am looking to get rid of disapproves of my taking of T3 and told me if I want his help and guidance I have to come off it. I have been off it since August 2017.

List of symptoms are -

Constipation

Twitching in face muscles - mainly cheek, corner of eye, eyelid, corners of mouth

Dry skin

Splitting nails

Dry and scaly ears

Fluctuating weight

Joint pain

Feeling cold

Cold toes and feet

Feeling irritable and low

Loss of appetite

Cravings for specific foods - sugar, salt, cheese, chocolate

Heavy periods

Falling asleep

Headaches

Tinnitus

Dizziness when getting up from sitting

Back pain

Please could anyone advise? I have no idea what my next bloods will show and they are being done on Wednesday. Thank you!

Diagnosis in 2013

June 2013

TSH 45.5 (0.2 - 4.2)

FT4 10.8 (12 - 22)

Aug 2013 (75mcg Levo increased to 100mcg after results)

TSH 3.8 (0.2 - 4.2)

Oct 2013 (100mcg Levo increased to 125mcg after results)

TSH 4.5 (0.2 - 4.2)

FT4 15.5 (12 - 22)

Dec 2013 (125mcg Levo, GP said I was on enough and TSH only crept up a little more)

TSH 4.8 (0.2 - 4.2)

FT4 15.8 (12 - 22)

Feb 2014 (125mcg Levo, under an endo who was not adjusting dose)

TSH 2.7 (0.2 - 4.2)

Mar 2014 (125mcg Levo, still under the endo who was not adjusting dose)

TSH 3.6 (0.2 - 4.2)

May 2014 (private bloods, taking 125mcg Levo, still under the same endo)

TSH 1.89 (0.2 - 4.2)

FT4 13.8 (12 - 22)

FT3 4.1 (3.1 - 6.8)

Jul 2014 (125mcg Levo, locum endo said she could not explain these bloods fluctuating on the same dose but I had palpitations and anxiety, shaking, heart racing, heat intolerance, tiredness)

TSH 5.01 (0.2 - 4.2)

FT4 18.2 (12 - 22)

Sep 2014 (50mcg Levo, doubled to 100mcg after results)

TSH 2.65 (0.2 - 4.2)

FT4 15.7 (12 - 22)

FT3 4.1 (3.1 - 6.8)

Nov 2014 (100mcg Levo)

TSH 6.8 (0.2 - 4.2)

FT4 13.7 (12 - 22)

FT3 4.2 (3.1 - 6.8)

Jan 2015 (125mcg Levo started in Nov 2014)

TSH 3.98 (0.2 - 4.2)

FT4 13.8 (12 - 22)

FT3 4.0 (3.1 - 6.8)

Mar 2015 (150mcg Levo started in Jan 2015)

TSH 6.52 (0.2 - 4.2)

FT4 26.1 (12 - 22)

FT3 5.2 (3.1 - 6.8)

Aug 2015 (175mcg Levo started in May 2015, GP I saw mentioned T3)

TSH 1.20 (0.2 - 4.2)

FT4 19.4 (12 - 22)

FT3 4.2 (3.1 - 6.8)

Oct 2015 (75mcg Levo/10mcg T3 started in Aug 2015)

TSH <0.02 (0.2 - 4.2)

FT4 20.8 (12 - 22)

FT3 5.6 (3.1 - 6.8)

Dec 2015 (75mcg Levo/10mcg T3)

TSH <0.02 (0.2 - 4.2)

FT4 20.6 (12 - 22)

FT3 5.5 (3.1 - 6.8)

Jan 2016 (100mcg Levo/10mcg T3 started in Dec 2015 to relieve symptoms of hypothyroidism)

TSH 0.08 (0.2 - 4.2)

FT4 22.6 (12 - 22)

FT3 4.5 (3.1 - 6.8)

Mar 2016 (50mcg Levo due to Jan 2016 results, I was worried about overmedicating and endo said in her letter about Jan bloods "clearly you are still not feeling well but I am reluctant to increase your dose of either in case you are over replaced")

TSH 6.8 (0.2 - 4.2)

FT4 12.7 (12 - 22)

FT3 3.6 (3.1 - 6.8)

May 2016 (100mcg Levo/10mcg T3 started in Mar 2016)

TSH 3.8 (0.2 - 4.2)

FT4 18.3 (12 - 22)

FT3 5.0 (3.1 - 6.8)

Nov 2016 (125mcg Levo/10mcg T3 started in May 2016)

TSH 3.6 (0.2 - 4.2)

FT4 17.2 (12 - 22)

FT3 4.8 (3.1 - 6.8)

Jan 2017 (150mcg Levo/10mcg T3 started in Nov 2016)

TSH 1.65 (0.2 - 4.2)

FT4 16.1 (12 - 22)

FT3 4.5 (3.1 - 6.8)

Mar 2017 (175mcg Levo/10mcg T3 started in Jan 2017)

TSH 0.02 (0.2 - 4.2)

FT4 23.1 (12 - 22)

FT3 5.8 (3.1 - 6.8)

May 2017 (175mcg Levo only, T3 was taken away in Aug 2017)

TSH 0.03 (0.2 - 4.2)

FT4 21.1 (12 - 22)

FT3 4.3 (3.1 - 6.8)

Jul 2017 (150mcg Levo started after May 2017 results)

TSH 5.30 (0.2 - 4.2)

FT4 13.9 (12 - 22)

FT3 4.1 (3.1 - 6.8)

Sep 2017 (175mcg Levo started after Jul 2017 results, endo said I was thyrotoxic and this worried me enough to think I was going to get struck off so I reduced it to 25mcg Levo)

TSH 0.02 (0.2 - 4.2)

FT4 25.6 (12 - 22)

FT3 4.2 (3.1 - 6.8)

Nov 2017 (25mcg Levo after what happened in Sep 2017)

TSH 4.80 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.6 (3.1 - 6.8)

[Bluetopaz1985]

Current endo I am seeing says he does not understand my results going from one extreme to the other and has said he has never seen fluctuations like it. Also have a mental health diagnosis of General Anxiety Disorder on my letters, this came about after my first appointment with him.

[SeasideSusie Remembering]

Sound very much like autoimmune thyroid disease aka Hashimoto's. If not already tested then you need Thyroid Peroxidase and Thyroglobulin antibodies tested. Raised antibodies confirm.

Not surprised your endo doesn't understand, most are diabetes specialists and don't know much about treating hypothyroidism.

[Bluetopaz1985 in reply to SeasideSusie]

I dont know if they are positive.

Thyroglobulin antibody 463 (<115)

Thyroid peroxidase antibody 335.4 (<34)

Thanks

[Bluetopaz1985 in reply to Bluetopaz1985]

They were done years ago, just never told they were abnormal.

[SeasideSusie Remembering in reply to Bluetopaz1985]

You need them done again and you need to know the result. Even if they were negative last time, one negative doesn't rule out Hashi's because antibodies fluctuate so you'd need a few negatives, with low levels, over a period of time to completely rule it out.

[Bluetopaz1985 in reply to SeasideSusie]

*Thyroglobulin antibody 463 (<115)

*Thyroid peroxidase antibody 335.4 (<34)

[SeasideSusie Remembering in reply to Bluetopaz1985]

Yes they are positive. They are both over range. They confirm Hashi's. You don't need the test repeating.

As your endo knows these results, and as she says she doesn't understand them fluctuating, then she clearly doesn't know much about hypothyroidism and nothing about autoimmune thyroid disease so ditch her, she will keep you ill.

As 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.

Gluten/thyroid connection chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Hashi's and gut/absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. If not already tested then you need the following

Vit D

B12

Folate

Ferritin

[Bluetopaz1985 in reply to SeasideSusie]

Been told they were fine and I supplement vit D, magnesium, iron and B12. Do I still post?

Thanks

[SeasideSusie Remembering in reply to Bluetopaz1985]

Yes, please post. Fine is their opinion, optimal is what you need and I doubt they are optimal. Please post results, reference ranges, say what you are supplementing with and the dose, and how long you have been taking the supplements. Say if they are results before or after starting supplements.

[Bluetopaz1985 in reply to SeasideSusie]

Ok well I take magnesium in spray form because I can't swallow tablets. I restarted this last night and I am guessing my level was pretty low because after spraying 3 times on my leg the skin got very tingly. I take the spray at night to help me relax. I fall asleep at any other time during the day, but not when I am in bed. Also I get morning headaches and since using the spray in the past the headaches have gone. GP I once saw said magnesium in blood is not a good indicator of magnesium in the body but it was quite low in range (has been between 0.83 - 0.90 in a range of 0.70 - 1.00), so I have basically gone on instinct with the magnesium.

FERRITIN

Level of ferritin before supplementing with iron infusion (May 2013)

*FERRITIN 15 (30 - 400)

Level of ferritin after iron infusion (Jul 2016)

*FERRITIN 189 (15 - 150)

Level of ferritin with taking just 1 iron tablet since Feb 2017 (result Dec 2017, being redone)

FERRITIN 57 (30 - 400)

FOLATE

Level of folate before supplementing (Nov 2016)

*FOLATE 2.3 (2.5 - 19.5)

Level of folate as of Dec 2017

FOLATE 2.7 (2.5 - 19.5)

VITAMIN B12

Before B12 injection (Feb 2017)

B12 225 (190 - 900)

After 2nd B12 injection (Dec 2017)

B12 548 (190 - 900)

VITAMIN D

Before supplement 800iu D3 (Dec 2013)

VITAMIN D 41.1 (25 - 50 DEFICIENT)

After supplement (Jan 2018)

VITAMIN D 46.3 (25 - 50 DEFICIENT)

[SeasideSusie Remembering in reply to Bluetopaz1985]

FERRITIN 57 (30 - 400)

Ferritin needs to be at least 70 for thyroid hormone to work. See what your new level is and as well as your iron tablets you can help raise your level by eating liver regularly, no more than 200g per week. Take each iron tablet with 1000mg Vit C to aid absorption and help prevent constipation.

**

B12 548 (190 - 900)

Are you having 3 monthly injections which is the norm? If you feel the need you can top up between injections with sublingual methylcobalamin or self injecting.

**

FOLATE 2.7 (2.5 - 19.5)

Are you prescribed folic acid? If you can get your Folate level up then you old change to a good B Complex as we need this to balance all the B vitamins when taking B12.

**

VITAMIN D 46.3 (25 - 50 DEFICIENT)

The Vit D Council recommends a level of 100-150nmol/L and to achieve this you need far more than 800iu which, as you can see has done little to improve your level in 5 years.

As you have Hashi's then for best absorption you should use an oral spray. BetterYou do one in 3000iu dose and I suggest you double dose for now and take 6000iu daily for 6-8 weeks then reduce to 3000iu daily. Retest 3 months after starting with the spray. When you've reached the recommended level you need to find your maintenance dose which may be 2000iu daily, maybe more or less, maybe more in winter than summer, which is why it's recommended to retest twice a year to keep within the recommended range. A blood spot fingerprick testis available from City Assays for £29

vitamindtest.org.uk/index.h...

When taking D3, there are important cofactors needed

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 tissue where it can be deposited and cause problems. Magnesium helps D3 to work.

BetterYou does a D3/K2 spray which you may find best for you.

**

I would say it's pretty obvious that Hashi's has trashed your nutrient to levels and that you very likely have gut problems which need addressing. I will come back and edit this post when I have found another link for you.

EDIT:

Check out the post by SlowDragon towards the bottom of this thread, there is information plus links relating to gut/absorption issues.

healthunlocked.com/thyroidu...

[Bluetopaz1985 in reply to SeasideSusie]

Thank you. The folic acid is once a week and I have B12 injections every 3 months. Next one due the first week of May 2018.

[SeasideSusie Remembering in reply to Bluetopaz1985]

Why is the folic acid only once a week? In 13 months your level went from 2.3 to 2.7, that's abysmal, what is wrong with your GP, can't he see this? Normally folic acid is taken daily so is there a particular reason that you only take it once a week?

[Bluetopaz1985 in reply to SeasideSusie]

Thanks. It's once a week because I had symptoms indicative of B12 deficiency.

[SeasideSusie Remembering in reply to Bluetopaz1985]

It's once a week because I had symptoms indicative of B12 deficiency.

So your B12 deficiency is being addressed by injections, so you need the folate level addressing. You need to get that sorted, you know how little your level has risen in 13 months, I would see a different GP to discuss this.

[Angel_of_the_North in reply to Bluetopaz1985]

Well, they were positive as they were higher than the number in brackets. They may be better or worse now, but you have Hashis (aka Autoimmune thyroid disease, so your result swill fluctuate as the thyroid is progressively destroyed and excess hormone dumped into the blood each time. An endo should really know that but they are surprisingly ignorant. Often taking organic selenium and going gluten free will help to stop antibody attacks (as will keeping TSH really low or suppressed)

[Bluetopaz1985 in reply to Angel_of_the_North]

Ok. Gluten is in everything though so I don't know how to avoid it. I don't eat anything for breakfast (too early in the day for me) but I have sandwiches for lunch and then a microwave meal for dinner. I am sure the microwave meals have gluten or traces of it in them but it's going to be hard to get away from it.

[Angel_of_the_North in reply to Bluetopaz1985]

Avoid processed food and read the back of sauce bottles. Not hard to avoid gluten if you do that. Don't eat microwave/ready meals - that's processed food - always cook from scratch with fresh ingredients - doesn't take long to prepare, just a bit longer to wait while it cooks (and you can do something else while it is cooking). In fact, I'm one of those paranoid people who won't even have a microwave in the house. Salad or cottage cheese for lunch (unless avoiding dairy), not sandwiches. Sounds hard, but it isn't

[Bluetopaz1985]

So do I increase dose now or wait until after bloods are done on Wednesday? Do I reintroduce T3 on the Wednesday if that was what I felt well on regardless of where my results are? Judging by my symptoms I do not feel great, I can't put up with having to endure cold feet when waiting outside for my bus and I'm shivering to death. Mood really low, am thinking of resorting to antidepressants because of this situation.

Thanks

[SeasideSusie Remembering in reply to Bluetopaz1985]

No, don't increase now. Get bloods tested on current dose and see where they lie. You will almost certainly need a dose increase after that.

Don't add T3 at the moment.

Hashi's can cause gut/absorption problems which can trash vitamin and mineral levels so you need to see what your current nutrient levels are like and address any deficiencies and any gut problem you may have before adding T3. Thyroid hormone can work until these have been addressed.

[Bluetopaz1985]

Antibodies before that

*Thyroglobulin antibody 226 (<115)

*Thyroid peroxidase antibody 98.5 (<34)

Before that

*Thyroid peroxidase antibody 83 (<34)

Before that

*Thyroglobulin antibody 882.5 (<115)

*Thyroid peroxidase antibody 171 (<34)

I am guessing positive?

[SeasideSusie Remembering in reply to Bluetopaz1985]

Answered above.