What is best advice to friend with Hashis and getting thyroid removed?

[Jackie419]

My best friend was diagnosed hypo just over a year ago, never tested for hashi's until recently. She has a huge goiter that is giving her problems, so they are removing the thyroid completely and she has now also been diagnosed with Hashi's. I want her to be prepared and trying to avoid any surprises. She has been on Synthroid since being diagnosed hypo a year ago. Thanks!!

[Barb135]

Again, without seeing the lab results and reference ranges, it's hard to say much, but if her "FT3 could have stood to come up a bit", maybe she simply needed to increase her dosage a little or add some T3.  Again, I'd have to see labs in order to determine if there might be a conversion issue, which is quite common.

I've been on synthetic T4 (Tirosint) and generic T3 for well over 3 years and doing good, as long as I keep my FT3 level up.  Others really need the desiccated.  

Perhaps a year is not long enough; we often see members who have been working at getting levels right, for much longer than that.  It actually took me over 2 years; part of that was my doctor and his method of treatment (or maybe I should say "lack of treatment"), so sometimes, we need to look at factors, other than the medicine.

[Jackie419]

Thanks Barb!
I have convinced her about telling she's been sick, she's young and still feels invincible, but she knows now. I think the Bruce thing had me worried, so thanks about that. I don't have her labs to post but I do know that her levels are pretty close to good, ft3 could have stood to come up a bit and same for ft4, but not bad at all. She has been on Synthroid for over a year and has had not a lot of relief from her symptoms and problems losing weight and continual memory issues among other things. I worry about Cytomel too. Dessicated has worked for me in those areas so I thought it might for her as well. I know we all have our own thing that works!

[Barb135]

While I don't like to mention other members without their permission, Bruce is an unusual case, because he's had issues that  few people have. His experience should not  be used as an example of regularly occurring incidences, because his are extreme and don't happen that often.  

If your friend has a respiratory problem/infection, I'm sure it will be discovered during the pre-op exam and if not, she wouldn't be too smart if she didn't mention it, since a current infection could actually cause a variety of issues.

Not sure about your insistence for "natural" medication vs synthroid or other brand or generic meds.  You haven't posted any labs, so we don't know if she would even needs the extra T3 from natural (assume you mean desiccated) meds, such as Armour, ERFA, etc.  

"Natural"/desiccated medications are derived from pigs that produce about 4 times more T3 than the human body normally produces; this isn't really "natural" for humans and some people need it, others don't; again, that's based on labs, symptoms, conversion, etc. .  

Maybe some who have had total removal will stop by (last I knew, Bruce is on vacation for a week), but no one can be prepared for all the unforeseen problems, because what one person experienced might be way different from what another experiences.

[Jackie419]

Thanks for the input and good wishes guys. We are both well schooled in the testing process and the levels and ranges. I am just hoping someone who has been through it may post about any unforseen problems we may not have thought of. I would like to see her put on natural thyroid rather than synthroid to be honest. Her surgery is next Monday and right now, she is having a sinus infection with a slight upper respritory problem and I am trying to convince her to let them know this. She is as stubborn as I am...she just wants it out, but I told her it's important to let them know. She does pre-op on Thurs. I have gotten some good thoughts reading Brucegoldbergs posts but just want her to be prepared for anything. Thanks again

[Barb135]

Since your friend is already on synthroid, there probably won't be much change for your friend, though she may find a higher dose required, since she will be getting nothing from her thyroid.

As flyingfool said, be sure that she has Free T3 and Free T4 tested each time she has blood work; please note that she must specify FREE T3 and FREE T4 or she will most likely get tested for the Totals, which are obsolete and of little value. She will need a doctor willing to test for these hormones, regularly, as well as being willing to treat clinically (i.e. according to symptoms, more so than lab results), regardless of whether or not labs are "in range" because simply being in range, is often not good enough.  

Best of luck to your friend.

[flyingfool]

Hashi's is a progressive auto-immune response that attacks and eventually eliminates the Thyroid's ability to produce hormone.

Most people are able to be treated without removing the thyroid but it sounds like there were other complications that the Dr's believed it best to have the thyroid removed.

In any case the only way to get thyroid hormone with the thyroid removed is by complete replacement by medication.

So she should be prepared to be patient as the medication is slowly adjusted to what level of medication she needs. This can take  long time and people tend to get very anxious and a person may not feel the best being Hypo and may be symptomatic while the dosages of medication is slowly raised and this can be frustrating to a lot of people.

Make sure that she has the Free T4 and Free T3 both tested in addition to TSH.  Without these tests it is nearly impossible to accurately adjust the medication levels.  Unfortunately this is not always done and many Dr's seem to rely upon TSH only.  So you may ask your friend to make sure her Dr who treats her is willing to test for these.  If not she may want to find another Dr who does.  It really is that important.

Someone else would have to comment as to what the surgery and recovery is like from their experience. I really don't know enough about that aspect to even render a credible opinion.