Thyroid Hormones Worse after 9 Weeks on Levo - Thyroid UK

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Thyroid Hormones Worse after 9 Weeks on Levo

Cola4444 profile image
16 Replies

Happy Sunday folks.i

Bloods - all input welcome... thank you !

(A) Summary:

- 9 weeks on Levo (4 wks @ 25mcg & 5 wks @ 50mcg)

- TSH down near 50% from 5.55 to 2.87 (was the same after initial 4 weeks on 25mcg Levo at 5.56).

- T4 down to 29% thru range from 58% thru range pre Levo after 9 weeks (& was down from 58% to 13.6% after first 4 weeks well under-medicated at 25mcg)

- T3 down to 34.6% thru range from 41% thru range pre Levo after 9 weeks (& was down from 41% to 31% thru range after first 4 weeks well under-medicated at 25mcg).

- Hypo Symptoms far worse since starting Levo... especially joint/muscle/nerve pain & migraines going to the back of my head & neck.

(B) Latest bloods 11/08/20 are (after 9 weeks on Levo):

- TSH: 2.87 (0.34 - 5.6)

- FT4: 0.87 (0.59 - 1.54) 29.4% thru range

- FT3: 0.31 (0.22 - 0.48) 34.6% thru range

- Ferritin: 37.6 (15-200) * Up from 30 the past Month

(was 95: 29/5, 58: 22/6, 40: 2/7, 30: 13/7)

- Folate: 12 (3.10 - 20.5) * Up from 4.9 since 26/5

- B12: 687 (188 - 887) * Up from 656 26/5

- Total D: 58 (30-100) * Up from 35 17/2 & 44 4/6)

Out of curiosity - I would love to get a RT3 test but they don't have it here in Thailand, where i'm currently in Covid lockdown. Having said that, I think my problem is that I simply don't have enough hormone.

Doctor said this week (11/8)... that my tests look good all in range. Dohhh ❌ Explained my symptoms far worse and persuaded Doctor to Ok half a Thyroid-S tablet for the next 4 weeks and take from there (as opposed to an increase in Levo to 75mcg).

I know its early days, but this Levo is making me worse.

Hindsight tells me that starting too low on 25mcg was a big mistake !

Onwards and upwards now on 50mcg Levo & half a Thyroid-S NDT for the next 4 weeks (half of 38mcg T4 & 9mcg T3).

5th day now on Thyroid-S... and touch wood I think its improved some symptoms already. Feel like i can breathe better for one.

Thank you good people !

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Cola4444
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

50mcg levothyroxine is only the standard starter dose, so hardly surprising that you feel worse

Results suggest fairly good conversion, though conversion rate can get worse as Ft4 reaches near top of range

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

On NDT TSH likely to drop very low ....most important result is ALWAYS Ft3

Retesting in 6-8 weeks

all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

If/when also on T3 or NDT make sure to take last half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Cola4444 profile image
Cola4444 in reply to SlowDragon

Thank you SlowDragon some good references. Very useful about NDT dosing before testing.

greygoose profile image
greygoose

Absolutely no point testing rT3. It will tell you if your rT3 is high, but it won't tell you why. And, there are many, many, many reasons for high rT3, and only one of them has anything to do with thyroid. That is when your FT4 is high up in-range - (which is why SlowDragon says that conversion could get worse when FT4 gets higher. At a certain point, T4 starts converting to more rT3 than T3.)

But, your FT4 certainly isn't that high yet. And, even if it were, you wouldn't need an rT3 test to tell you your rT3 was high because it just would be.

Also, what would you do about it if rT3 were high? What you read on STTM about T3 only 'curing' rT3 is just a myth. It's also a myth that rT3 blocks T3 receptors, or has any effect whatsoever on T3. So, if I were you, I would just forget it. Not worth worrying about. :)

Cola4444 profile image
Cola4444 in reply to greygoose

Thanks Greygoose. Got it ... 👍🏼

greygoose profile image
greygoose in reply to Cola4444

You're welcome. :)

SeasideSusie profile image
SeasideSusieRemembering

Cola4444

I would love to get a RT3 test but they don't have it here in Thailand, where i'm currently in Covid lockdown.

Don't bother, it's a bit of a red herring and not worth the expense.

Testing rT3 can tell you if it's high but it can't tell you why it's high, and there are many, many reasons for high rT3, only one of which is to do with thyroid and that is an excess of unconverted T4. Other conditions that contribute to increased Reverse T3 levels include:

· Chronic fatigue

· Acute illness and injury

· Chronic disease

· Increased cortisol (stress)

· Low cortisol (adrenal fatigue)

· Low iron

· Lyme disease

· Chronic inflammation

Also selenium deficiency, excess physical, mental and environmental stresses. Also Beta-blocker long-term use such as propranolol, metoprolol, etc. Physical injury is a common cause of increased RT3, also illnesses like the flu. Starvation/severe calorie restriction is known to raise RT3. Diabetes when poorly treated is known to increase RT3. Cirrhosis of the liver. Fatty liver disease. Any other liver stress Renal Failure. A fever of unknown cause. Detoxing of high heavy metals.

With your FT4 level it's obvious you don't have an excess of unconverted T4.

What's happening about your dire ferritin level?

Cola4444 profile image
Cola4444 in reply to SeasideSusie

Thanks Seaside Susie. Good info

Ferritin just seemed to get more depleted as I got my Hypo. Started taking dedicated Ferritin supplement on an empty stomach in the mid afternoons with orange juice... seems to have stopped it from dipping further. Also getting thru some dark chocolate and chicken liver pate now.... so fingers crossed.

Wrecking the stomach though 😁

NWA6 profile image
NWA6

So this is how I think it works. So you were symptomatic, you got tested, high TSH, low FT4 and diagnosed with Hashi’s and started Levo. Before starting treatment you were naturally making X amount of T4 because your TSH was sending down a larger signal to the thyriod. Now that you’re on treatment that supplement has interrupted the signal (TSH) so your thyriod is not kicking out as much and what your results show is what you’re supplementing.

This is quite normal but you’re just not on high enough dose. For the most part TSH is now irrelevant because you have disturbed the natural order of how the loop works. So now you just need FT4/3 measured and optimise from them.

As you can see from your latest results you need to up your Levo, you probably need double the amount but increase by 25mcg every six weeks so that you can find your sweet spot. Don’t forget that when you increase and feel better but maybe not optimal you can increase by another 25mcg daily or every other day 50/75. So for me when I was feeling good but not quite optimal I would ‘play’ with my intake, eg 100 4 days and 125 3days. You might be a ways of ‘Tweaking’ but I just wanted to make you aware that it’s not ‘all or nothing’. You can think of your dose over the space of a week rather than daily. For example I take 950mcg per week which works out to 135.7mcg per day but I take it as 150x5 and 100x2.

Sorry long winded and I’m maybe getting ahead here but this is so individual that you need to know that there are very few rules, once you are established on a high enough dose then ‘tweaking’ to find your sweet spot is essential.

Cola4444 profile image
Cola4444 in reply to NWA6

Well explained NWA6.

Getting more knowledge step by step.

Thank you !

hashiman profile image
hashiman

Hi cola4444

Just from my point of view if ferritin is low I also really struggle breathing . Also I’ve found after 4 years or so of being diagnosed with Hashi’s it is vitamin depletion’s that play a massive part in aches and pains and keeping towards top of range helps with these tremendously. You seem to be on quite a low dose at 50mcg so obviously after only 9 weeks your just starting your healing journey the doctor will keep checking TSH and hopefully dose until this is below 1 and you will hopefully start to feel better 🤞🏼 (many people will say that isn’t the best measure tsh it has worked for me)There are many more knowledgeable people on here than me but I would just stick with T4 to start off with and getting vitamins optimal , if you start adding T3 etc you are not going to know where you are . It takes time to feel better Levo isn’t a magic bullet on its own unfortunately and it does take time to work. Finally as a middle aged man I would get your testosterone levels checked it was finding this was low as well as hashi’s and being treated for Low T that really was a magic bullet !

Cola4444 profile image
Cola4444 in reply to hashiman

Sorry I forget to use Reply ... Dohh.

Message below in the thread.

Cola4444 profile image
Cola4444

Hi Hashiman,

Really appreciate your input.

I'm getting to understand that Hash's is a much about resolving the vitamin depletion as much as it is regarding Thyroid replacement. Ferritin went down from 95 (May) to 30 (July), 37.6 (August). Expecting an improvement next week as i've been supplementing Ferritin, Vit.C & Chicken Liver pate coming out my ears.

I'm on Testosterone replacement for the past 3 months now. Testoviron Depot (was fortnightly & now 3 weekly). Having T-shot tomorrow and will have T bloods checked, because I think 3 weekly is stretching it. I've been offered Nebido 3 Monthly... but i don't fancy that amount being injected in one go.

Alot of Fibromyalgia symptoms up to near recent - especially hip flexors & knee.

Testosterone was mid 5.5 ng/ml last year, then 4.49 in April & 3.49 in May of this year (R: 2.41-8.27). ED symptoms for years.

After 10 weeks on Levo (25/50mcg) I added half Thyroid-S NDT.

After 14 weeks I decided to drop the Levo because of the fatigue, headaches & joint pain.

I'm now on 1.5 Thyroid-S and may increase to 2 next week (18 weeks... full bloods review).

Unfortunately, I won't know if the issue was with Levo or just undermedicated, but i'm sure i'll test that theory again - possibly trying to up my T4 to mid range with additional Levo to top up NDT.

Main symptom now is a morning migraine that eases by mid afternoon (after 2 cups of coffee).

Fibromyalgia type symptoms largely gone the past few weeks on NDT.

ED initially improved with Testoviron but really bad again with low libido.

I'm hoping improved Thyroid Hormones will improve it

(T4: 33% & T3: 42% - 3 weeks ago).

Likely to consult male hormone specialist going forward... as very low DHEA, LH, GH. Prolactin has risen from 10.27 (May) to 21.7 (July).

Thank you Hashiman.

Not too many males in this group.

hashiman profile image
hashiman in reply to Cola4444

In my experience because we are trying to fight 2 battles as it were it’s so hard to know which way to turn for the best . From my experience sorting out Low T was my golden bullet without question it’s taken a lot of time to sort out . I started on testogel then worldwide supply issues ... so they put me on testim gel and my body reacted badly to this coming out in rashes where applicated on arms . So then put on nebido great for 8 weeks and terrible for 3 weeks (11 week injection intervals) couldn’t handle the 3 bad weeks so endo put me back on testogel as supply issues were resolved this works well ,very much of a middle of the road treatment you don’t get the highs as it were with nebido but you don’t get the lows either so pretty much happy with this endo has also pesicribed Ciallis for when needed don’t need this so much these days but it’s there if needed (just for note ciallis can give be a splitting headache for a while). Supplements just go on and on , I think if you take everything that’s mentioned you would be popping tablets all day long . For me the most helpful have been selenium , Thorne basic b, iron , D3 / K2 , vitamin e, zinc and magnesium glycinate. If I’m honest I take a myriad of others and certainly Maca root , l-arginine , and tribulis can all help with ED too, also exercise can really help here and gives you some get up and go ! I know when your aching all over it’s the last thing you think of doing but a little really helps too much though won’t so be careful here . Once the above was sorted the hashi’s kind of fell into place too currently on 175mcg . I can still have flare ups , where I ache all over etc but generally finding I’ve eaten something I shouldn’t ie gluten etc .... it’s a long journey Cola4444 you’ll get there and you will feel better It just takes time.

Cola4444 profile image
Cola4444 in reply to hashiman

That's useful insight and some words of encouragement I can tell ya.

I saw an older comment of yours earlier about having low Testosterone levels with Hashi's - and that switched on a light bulb. As you say... we're fighting two hormone battles here. I can turn to ED problems going back to my early 30's (now 54). It also became a joke with my friends over the past few years... whereby i'd be in bed for 2 days after a few beers with the lads.

Must of been hypo for years.

I will investigate Testogel as an option

thank you ! I have 90 days of Cialis 5mg daily that I purchased when I was home in the UK at Xmas (still on lockdown in Thailand). Won't start the Cialis daily until my Thyroid bloods are near enough & the daily migraines have stopped.

Thanks for the heads up on potential ED support... interestingly, I have just received L-Citrulline/L-Arginine, Tribulus & Gingko?. I may introduce one at a time starting in a few weeks.

My last Testosterone was at the top of the range at 8.58. Have you gone right to the top / beyond the range - and if so any symptoms ?

Thanks again Hashiman 👍🏼

hashiman profile image
hashiman

Yep all sounds pretty similar to my experience , I think mine all started with glandular fever in my early teens and then had it again in my early 20’s which is I guess what caused hashi’s to flare started with Low libido etc in 30’s and put it down to stress young kids and running my own business by the time I was 44 didn’t matter how much training I did I couldn’t shift a pound , went to the GP and diagnosed hashi’s and low t although didn’t treat low t to start off felt loads better once we did . My problem now is I have a high haemoglobin count due to Testo replacement (could be hereditary though) so I can only have a certain amount of trt so never near top of range at all as I guess in layman’s terms it would make my blood too thick.

Cola4444 profile image
Cola4444

Thanks for sharing your experience.

It helps. Yes I think stress can play a big part. You sound like you've had a full on life... on top of dealing with health issues.

I'll keep an eye out on my haemoglobin count just in case.

Many thanks and very best Hashiman.

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