Gaining weight on Levo

[timinko2016]

Hey everyone, first time posting:

First a little backstory:

Diagnosed with hypothyroidism in 2002 at age 25, put on Levothyroxine and settled on 75mg/6 days a week. Was on this dosage for the years following. In August 2017 my endo told me that my hypo is autoimmune based so I started googling and found AIP autoimmune protocol. Changed my diet completely (I had already been gluten free due to migraines for 4 years prior) to remove inflammatory foods and effortlessly lost about 11 kilograms. For the first time in my life I felt amazing, full of energy, waking up before alarm easy, sleeping well, skin cleared, ends of eye brows grew back, lost brain fog and the feeling of „heavy headedness“. All this time still on 75mg Levo/6 days a week. Then in October 2018 I was scheduled for a check up with my endo (every 18 months). He saw I had lost weight and feeling so good, and suggested that if labs taken that day are ok, let’s lower the dose to half the amount, and then after two more months get labs and if they are still ok, go off Levo completely. He had only tested TSH everytime, and it was around 1 usually. I also always took my Levo before blood draw as did not know otherwise. So labs that day in October said TSH is 1,0 (0,2-4,2), (having taken Levo that morning), so dosage was lowered to half. I still felt amazing, even lost two more kilos by the end of November. Next labs in December TSH was 3,2 (did NOT take Levo prior to these), endo ordered to stop taking it completely and test again two months later. So I stopped.

What happened next: soon after stopping meds I veeery slowly started gaining a little bit of weight, very very slowly. In about eight weeks I gained 2 kilograms. I hoped that labs in February would show I needed the meds but TSH in February was 2,8. Since even better than in December, endo ordered to remain without medication.

I soon started feeling more hypo symptoms besides gaining weight, Fatigue settled in, energy went down, started needing naps, having a sense of a heavy head in the morning, cold hands and feet, not being able to empty my bowels completely, hairloss, and lost the outer end of my eyebrows again. My endo wanted to wait six months before next labs, but I could not imagine going on like this for so long so I self ordered labs in April, testing a full thyroid panel for the first time:

Results- April 26,2019

TSH 6,17 (0,27 - 4,20)

aTSHR 1,38 (0 - 1,75)

fT3 3,74 (3,1 - 6,8)

fT4 12,18 (12,0 - 22)

Tg 22,51 (3,5 - 77,0)

aTG- 17,67 (0 - 115)

aTPO 11,90 (0 - 34)

Seeing these results endo suggested to start back on low dose (25-50mg/daily) of Levo IF symptomatic, or wait six more months and retest. Since I was very symptomatic, I started on 37,5 mg a day, halving pills that I had at home.

Here is my questions and big concern:

About two weeks after starting Levo back, I started gaining even more inches quite rapidly. As if each morning I wake up I feel bigger. Two weeks in I increased to 50mg/daily but keep gaining inches. Also fatigued and low energy.

I have new labs, done on June 11, 2019, with more tests than I ever had done:

Fe (Iron) 14,20 / range 6.6-28.0

CK-Fe (Total Iron Binding Capacity) 44.50 / range 40.8-76.6

VK-Fe (Free Iron Binding Capacity 30.30 / range 24.2-70.1

Saturation 31.91% / range 20-40

Feritin 172.00. / range 22-640

Transferrin 1.97 / range 2.50-3.80

Sodium 135.0 / range 135-145

Pottasium 4.37 / range 3.50-5.50

Magnesium 0.83 / range 0.53-1.11

Zinc 16.30 / range 9.1-16.40

TSH 1.900 / range 0.27-4.20

fT3 3.46 / range 3.1-6.8

fT4 16.21 / range 12.0-22

aTSHR <0.30 / range 0-1.75

aTG 25.22 / range 0-115

aTPO 12.70 / range 0-34

DHEAS 5.01 / range 1.7-9.2

TST 0.73 / range 0.29-1.67

PROG 31.87 / ranges fol. 0.181-2.84

ovul. 0.385- 38.1

luteal. 5.82-75.9

postmen. 0.159-0.401

ESTROGEN 424.20 / ranges fol. 98-571

ovul. 177-1153

luteal. 122-1094

postmen. 18.4-183

FOLATE 20.89. deficit: <7.60

borderline 7.60-12.2

normal >12.2

B12 393.10 / range 156-672

Vitamin D 24.17 deficit <20

insufficient 21-29

sufficient 30-44

high >60

Would anyone please look at this and be able to point me in the right direction and explain why I am gaining inches so bad so fast and what to do? Thank you so much!!

[SlowDragon Administrator]

Are you in the Uk?

You're woefully under medicated

Your endocrinologist was completely wrong to stop Levothyroxine

Dose of Levothyroxine has to be increased slowly in 25mcg steps upwards. Standard starter dose is 50mcgs

Bloods should be retested 6-8 weeks after each dose increase

You will need to retest after 6-8 weeks on 50mcg

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2

(many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Vitamin levels frequently drop if dose is reduced

Your vitamin D is now low

Assume this is ng/ml ?

Are you now supplementing?

[timinko2016 in reply to SlowDragon]

Thank you so much for responding. I am in Slovakia. Yes, looking to start D3, but not sure how much to take?? It iwas measured in ug/l. So part of the reason why my vitamins have dropped is because I was on no meds for five months? That would make sense. Although I don't remember having them tested ever before. But I felt great just a few months back (on meds that is). I also see that while TSH and fT4 have improved since April, my fT3 is even lower than in April. Should I be concerned about not converting maybe or is that too soon to tell?

[SlowDragon Administrator in reply to timinko2016]

Too soon to tell

You need to get Levothyroxine dose up to correct levels and all four vitamins optimal

Then retest, see how good conversion is then

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

[timinko2016 in reply to SlowDragon]

Thank you so much!! Would you recommend upping Levo to 75mg/day even if endo says no? I have not sent him my latest labs yet but I suspect he will say to stay on current dose since my levels are in range and that is all he looks at. Also how do I go about determining how much Vit D3 to take? I really appreciate your input and help.

[NWA6]

Oh timinko2016 😱 I’m so sorry you’ve had such god awful medical care. It’s almost criminal! Your endo has done the worst thing possible! I can’t believe there are still educated medical persons out there who do not understand Hashimotos 😩

Your story at first was so uplifting! Getting diagnosed, getting on the right dose of medication, diet and health all marvellous and then bam! A so called ‘expert’ related you that’s it ‘I’ve cured you, no need for Levo anymore’ what a flippin idiot 😩

[timinko2016 in reply to NWA6]

Paula6 Thank you for empathising with me. Yes, I wish I had not agreed to go off levo at all but I must admit I too was curious how I would do without it. Though it is so challenging now I want to believe something good can come out of this. Even if it is just knowing to encourage others to not wanting to fix what is not broken. One of the lessons I am learning through this.

[Hidden]

"He saw I had lost weight and feeling so good, and suggested that if labs taken that day are ok, let’s lower the dose to half the amount, and then after two more months get labs and if they are still ok, go off Levo completely. He had only tested TSH everytime"

So he saw you were feeling good and decided to make you feel bad again!!!!!!

And he only tested TSH!!!

Criminal incompetence is one way of describing it (without being rude). He should not be allowed to practice any more - or at least not on people with thyroid problems.

[timinko2016 in reply to Hidden]

I agree with you. It is interesting that he is considered one of the top endos in my city. I am currently searching for a new one but I don't have high hopes.

[Hidden in reply to timinko2016]

"he is considered one of the top endos in my city"

Maybe he is for some hormone problems, but obviously not for thyroid