Gained 10 lbs in 1 month on desiccated thyroid

[Jenn1302]

I've had Hashomoto's for 8 years and 8-9 months ago my thyroid went out of whack. I experienced strange symptoms, such weight gain, palpitations and extreme sleepiness but at some point my weight went back to normal. Most of my symptoms went away when I was put on desiccated thyroid and I’ve been on this medication since September. I feel a lot better, but now I’m gaining weight again :(.

The thing is that my test results are pretty normal (except for the tg which is usually negative) and I really don’t get why I’m gaining weight. Over the past month I’ve worked out approx 6 hours per week and my workouts have been relatively intense. I generally eat less than 2000 calories per day. Heck, I’ve been consuming less calories than I was the last time I gained 10+ lbs and I've been putting on weight a lot faster. Based on this calculator: https://www.thecalculatorsite.com/health/bmr-calculator.php I'm supposed to be eating 2000+ calories per day to maintain my normal weight. Something’s definitely off.

Here are my most recent test results, from 2-3 weeks ago:
TSH: 0.05 L (0.3-4.0)
FT3: 3.6 (2.5-5.9), bottom 32%
FT4: 14 (9-19) , right at 50%
TPO: 380 H (<40)
TG: 130 H (<40) <- this antibody was negative in August

Has anyone experienced this? What did you do?

[Jenn1302]

Test results:
TSH: 0.29 (0.3-4.0)
Free T3:  3.6 (2.6-5.8)
Free T4: 9 (9-19)

I'm on desiccated thyroid (morning: 45 mg, afternoon 30 mg). My TSH and FT4 FT4 are borderline low. I feel pretty good so I don't know what this means.

[Jenn1302]

Update: upped to 75 mg (morning: 45 mg, afternoon: 30 mg)

[telus2]

Hi Jenn, I'm in Canada too. On thyroid hormones since 1980's. But really got in to researching thyroid stuff when I got atrial fibrillation a few years ago. I'm just gonna give you a few comments.

It appears that your doctor(s) are making the classic mistake in the way they are using ERFA - that is, ERFA and other natural desiccated thyroid (NDT) products are known to suppress TSH. If TSH is suppressed, your natural thyroid gland will not produce any thyroid hormone, and therefore if you give someone ERFA, you must give them a dose that fully replaces the output of a normal thyroid gland. They do not know this because they did not learn about NDT at doctor school, they only learned about Synthtoid which does not suppress TSH like NDT does.

So here is some ammo for you when next you meet the doctor - a normal functioning natural thyroid gland produces 90 to 100 mcg of T4 every day and around 6 mcg of T3. The 60 mg ERFA that you are taking contains 38 mcg T4 plus 9 mcg T3. It is very easy to see that 60 ERFA is a very long way from a replacement dose and anyone receiving only 60 mg would obviously be hypothyroid.

I presume that you were taking synthroid or similar before starting ERFA. If you don't get anywhere with the doc on upping the ERFA, you might be better off in the short run to revert back to synthroid, somewhere in the 100 to 125 mcg range, while you figure out what to do next.

Re slow release. First, if you go that way, you still need more than what you are getting now. I don't believe that you will find commercially available slow release NDT. The NDT that is in tablets is known to pharmacies as "Thyroid" or "Thyroid USP" or "Desiccated Thyroid USP" (see WIKI). Compounding pharmacies can make "slow release" or "sustained release" capsules for you. Simply phone a local compounding pharmacy and ask them.

Another option is synthroid along with slow release T3. That is what I use. The pharmacy calls the T3 "SR Liothyronine". I went that way after reading the paper cited below; there is a ton of practical advice in this paper.

Hypothyroidism: Optimizing Therapy with Slow-Release Compounded Thyroid Replacement, by Martin Milner, ND., published in International Journal of Pharmaceutical Compounding, July/August 2005.
which can be found here:
http://www.townsendletter.com/FebMarch2007/hypothyroid0207.htm

[Jenn1302]

I’ve never been on anything other than Erfa and compounded desiccated thyroid. A year ago I started having horrible palpitations that seemed to be associated with hormones and slow heart rate. They were so bad that they would wake me up at night and wouldn’t let me sleep. I went to various doctors and no one could figure out what was wrong with me.

They ran some tests and all the tests came back “normal” but my FT3 was very close to the bottom. My TSH was >3 and my FT4 was far from optimal. I had all the symptoms of hypothyroid and positive Hashimoto’s antibodies. I did some research and realized that the US and the UK would consider my test results borderline hypo and that my heart palpitations were probably related. I tried to go the MD route but it seemed complicated and it was taking forever. I ended up seeing an ND and doing a trial on desiccated thyroid. Within a month or two my heart PVCs were gone but I still had some hypo symptoms. My body seemed to be reacting very quickly to the point where my naturopath was concerned that I would go hyper. That’s why it’s being upped so slowly.

My naturopath mainly seems to care about my FT3 and FT4 levels and she definitely wants them higher than they are now. The problem is that my family doctor and most MDs I’ve seen are mostly concerned about my TSH level and they won’t do anything that goes against the guidelines. They don’t seem to trust NDs or desiccated thyroid and they really want me to me to see an endocrinologist. I can’t just ignore what they say because they’re the ones sending me for blood work every time my naturopath ups the dose (I can’t afford to pay for blood work out of pocket). How do I convince my doctors that there’s nothing wrong with having a very low TSH when you’re on desiccated thyroid?

[gimel]

Just sent you a PM with info.  To access, just click on your name and then click on messages.

[gimel]

I don't know of any slow release NDT that is readily available.  I will do some checking on that.  You might be able to locate a compounding pharmacy that could take your NDT  and  add to it something that would slow the release.   I doubt that it could be effective enough to provide continuous release throughout the whole day, but it could be better than current experience.

[Jenn1302]

Thank you Gimel.

[gimel]

There was a study done that showed the effect on TSH levels, from splitting a significant dose of thyroid med into multiple doses.    Normal, single doses of T4 med consistently suppressed TSH.  By splitting the same dosage amount into 2 doses, it increased TSH levels, except at the higher dosages of 130 - 150 mcg of T4.   By splitting the same dose into thirds, there was a further significant increase in TSH levels.  So you might consider splitting your med into 3, or even 4 doses taken at different times of the day, to  try and avoid the doctor's concern about suppression of TSH.   Also you should keep pointing out to them that  TSH is only a surrogate test for the actual thyroid hormones.  It is your Free T4 and Free TT3 levels that are important.

You might also find useful this study that concluded:  "Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."

https://www.ncbi.nlm.nih.gov/pubmed/29396968

There was also a study done with rats, which are good surrogates for test purposes:  This study concluded that "Only a continuous infusion of T4 and T3 in the
same 6:1 ratio produced by the rat’s thyroid gland restored both serum and tissue levels of T4 and T3 to those of controls without suppressing the TSH."  So here again it shows the suppressive effect is not there when there is continuous flow of thyroid hormone instead of a single dose.  

[Jenn1302]

Thank you Gimel. Are sustained release capsules available for NDT? Where and how can I get them? What brands? I feel like that would be a good way to have continuous flow of thyroid medication throughout the day.